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Main Forums => Living With HIV => Topic started by: minismom on January 06, 2009, 08:07:28 am

Title: Mini update
Post by: minismom on January 06, 2009, 08:07:28 am: Some of you already know that December has been very rough for Mini healthwise. Monday, December 8th, she woke up with 105 fever. I took her in and she had double pneumonia (her 10th), strep throat, and a sinus infection. Her O2-sturation was 85% and her respirations were 24 (high). She was put on a host of meds and sent home.

On Wednesday, 10th, I took her back for a scheduled follow-up. She seemed to be doing much better. Her O2-saturation was up to 98% and her respirations were down to 21. It looked like she was bouncing back very well.

After spending most of Thursday, 11th, in tears with an earache and me erroneously thinking it was from sinus pressure, we were back at the doctor on Friday, 12th. She had a bulging ear infection - caught despite the fact she was on an antibiotic. Her antibiotic was changed and, again, we were sent home.

Just before New Year's, she began complaining that she was dizzy and felt like she was going to fall over. She wasn't running a fever and was eating fine, so again I figured it was sinus stuff. However, on Monday, December 29th, she laid in bed saying that if she sat up she would get dizzy and sick to her stomach. So, off we went again to the doctor. This time, double ear infections - caught early. She's now on her 3rd round of antibiotics due to end Thursday.

She's not had a bought like this since going undetectable. She's had her share of runny noses and "normal" kid stuff, but not like this - constant and unrelenting. I've called her PID to see about getting her labs done early (not scheduled until March) but she's yet to call back. I'll not go into my shear aggrivation and frustration - you've all heard it before.

So, after 4 doctor's visits in 3wks, and explaining that Zerit is NOT a diabetic medicaion, here we are. If once off this round of antibiotics she gets another ear infection, I'll forego her PID and move straight to her ENT to talk about putting tubes back in.

Mum
Title: Re: Mini update
Post by: cjc on January 06, 2009, 08:16:30 am: Bless her heart, I hope things get better for her soon. You take such good care of her, It must be really frustrating for her to be so sick despite all care you give. I hate it when Robert has a ear infection, sometimes a warm washcloth applied to the ear helps ease it a little. Hope this round of antibiotics helps. Best of luck to you all. Cristy
Title: Re: Mini update
Post by: Jody on January 06, 2009, 08:26:29 am: I'll have fingers and toes crossed and sending all my blessings to Mini for a speedy recovery. Get well soon Mini !!!

Jody :(
Title: Re: Mini update
Post by: RAB on January 06, 2009, 08:33:38 am: Hey Mum

I'll do the same as Jody. Tell the princess that we're all sending positive healthy vibes her way to aid her quick recovery.

RAB
Title: Re: Mini update
Post by: RapidRod on January 06, 2009, 08:43:21 am: Sorry to hear that Mini is having a tough time. I would have to agree with you on the tubes. Best thing I ever had done. Keep us updated.
Title: Re: Mini update
Post by: komnaes on January 06, 2009, 08:49:40 am: Just accept a cyberhug Minimum, and a bigger one to Mini.

You both are in my thoughts..
Title: Re: Mini update
Post by: Mouse on January 06, 2009, 10:02:09 am: Ugh, I can't imagine how frustrating this must be for you. Just reading about it gave me a headache.

Get well soon, Mini! Ear infections are the worst. :[
Title: Re: Mini update
Post by: Miss Philicia on January 06, 2009, 10:19:29 am: Dear Mum, I'm so very sorry to hear that Mini is still dealing with these things after we talked about the first go around via PM's. I think I would totally do the ENT route if it was me. Please keep us posted and I'm wishing BOTH of you the best.

David
Title: Re: Mini update
Post by: Assurbanipal on January 06, 2009, 11:00:22 am: Dear Mum

Sorry to hear Mini is having such a hard time. Is there any way to get the PID and the ENT to confer?

Hope things get better
A
Title: Re: Mini update
Post by: YaKaMein on January 06, 2009, 12:09:13 pm: Hey Mom & Mini,
You're both in my thoughts right now. Maybe a big bowl of ice cream with a crumbled chocolate chip cookie on top will do some good. May not cure the ear infection or the pain ... but bring on a big smile. Hugs to you both right now. -YaKa
Title: Re: Mini update
Post by: pozniceguy on January 06, 2009, 03:19:47 pm: So sorry for the problems princess is having...I wish there were a magic wand or another tiara that would make her better...but for now just accept all the love, hugs and kisses from one of her "guys"......

Nick
Title: Re: Mini update
Post by: minismom on January 06, 2009, 05:02:50 pm: Thank you all so much for the kind words and well wishes.

Our youngest goes to the ENT the 13th of this month, and it will include a discussion about putting tubes back in Mim. She had tubes put in Sept. 10th, 2001 (just after her 1st birthday) because of the same situation: ear infections, antibiotics, finish the round, another infection. After 3mths of this, they put her on antibiotics until her surgery - 30 days.

We've talked to her about tubes and she said as long as she's asleep, never has to eat yogurt again, and can get a kids' meal after, then it's fine with her.

She'll finish this round on Thursday and we'll see what happens.

Mum
Title: Re: Mini update
Post by: Robert on January 07, 2009, 01:47:30 am: hi mini

hi mom.

I'm so sorry to hear this. Like I said before, it breaks my heart. Go see the ENT guy and get this fixed. My prayers are with you.

robert
Title: Re: Mini update
Post by: Veritee on January 07, 2009, 07:16:56 am: So sorry mum - All I can say is I hope she is better soon and love and best wishes to you all from me

Veritee
Title: Re: Mini update
Post by: Texan38 on January 07, 2009, 08:08:56 am: Hi Mum!

Well wishes and a Texas size hug is being sent to you, your family and precious mini. :-*
Title: Re: Mini update
Post by: AlanBama on January 07, 2009, 04:53:42 pm: My best wishes for a full and speedy recovery go out to our littlest angel. Mini honey, I know what it's like when your ears make you dizzy. I hate it.

It is so frustrating trying to get the help you need......hope things improve.

love & hugs,

Alan
Title: Re: Mini update
Post by: franfrog on January 07, 2009, 05:24:36 pm: Minismom
I am wishing Mini a speedy recovery. My daughter has had the tubes done 3 times now. Luckily it is quick but she should wear earplugs anytime she hits water after it. Good luck and watch with those antibiotics, they stained my daughters teeth. :-\
Title: Re: Mini update
Post by: anniebc on January 08, 2009, 01:49:03 am: Big hugs from Blackjack, King Elrond, Lady Lucy and their Mum...get well soon.

Hugs
Jan :-*
Title: Re: Mini update
Post by: tendai on January 08, 2009, 05:13:22 am: Mum, i hope Mini gets well soon..
Title: Re: Mini update
Post by: BlueMoon on January 08, 2009, 06:14:13 am: Tell her that if she doesn't want to eat her yogurt then I'll take it.

I hope she's feeling better soon.
Title: Re: Mini update
Post by: Ric Wilke on January 08, 2009, 10:23:07 am: Hi Mini,

We are sorry to hear what you are going through. We know that you will listen to what your Mum tells you. We also know that you are a true fighter. If anyone can get the upper hand on this it's you, Little Princess.

All our love with lots of hugs and kisses, Ric & Thom

PS - Hang in there Mum.
Title: Re: Mini update
Post by: aztecan on January 08, 2009, 10:33:47 am: Hey Mum,

What a terrible time Mini has been having. I agree with you and the others, tubes should be considered.

Give Mini a great big hug from her bald uncle. Oh, and Mum, have a hug for yourself as well!

HUGS,

Mark
Title: Re: Mini update
Post by: AndyArrow on January 09, 2009, 05:24:20 am: I'm so sorry to read about everything poor Mini and you are going through.

Sounds like she is letting you off easy if all she wants is to be asleep and a kids meal. She needs to work on her guilt skills. :D

Mc Donald's parfait (fruit with yogurt) is pretty tasty. Breyers (like the ice cream) yogurt is good too, and I'm not the worlds biggest fan of yogurt but eat because GI doc makes me.

AA
Title: Re: Mini update
Post by: minismom on January 09, 2009, 09:01:08 am: You all are so sweet! I read your posts to Mim yesterday and she said, "wow, I must have a lot of friends." :)

We had 3 inches of snow on the ground yesterday and we let her go outside. It was her first venture in a month and cabin fever was setting in. She had a great time, but paid the toll later. She came in, took a bath, ate a bowl of cereal, and was sound asleep before 8pm. Then, by 5:45am this morning, she was up and full of energy. I'm bracing for crankipuss later.

Today is the 1st day off her antibiotics. We'll be watching her closely for the next while (forever) to make sure she doesn't develope anything further. I called the ENT and he said it was fine to bring her in when our yougest goes next Tuesday. Not sure if he'll do tubes yet, but he'll be fore-warned that they are a big possibility.

Thank you all again for your prayers, warm wishes, thoughts, and encouragement. It means a lot to us all.

Mum

Andy, she is a very practical child (mostly) and has learned to take everything in stride. She doesn't fight us about going to the doctor, blood work (she LIKES it!). She gets tired of all the "extra" meds which are liquid and nasty. Can't blame her there. Believe me, she doesn't have to play the guilt card -I feel guitly enough.
Title: Re: Mini update
Post by: AndyArrow on January 10, 2009, 03:12:13 pm: I'm glad to hear see had a fun romp in the snow ... snowing like crazy here now Indiana (heading your way).

Practical and cute ... what more can you ask for!

The Breyers yogurt is called Yocrunch and it has all different kinds of toppings from M&Ms to granola. Yocrunch.com

Liquid medicine = nasty. That was the only good thing about having a feeding tube I could just poor that stuff right in and avoid my taste buds altogether.

Good luck with next Tuesday,
AA
Title: Re: Mini update
Post by: red_Dragon888 on January 10, 2009, 10:22:45 pm: Get well Soon Mini.

[attachment deleted by admin]
Title: Re: Mini update
Post by: minismom on January 11, 2009, 06:10:41 am: Well, here's the latest in a nutshell:

Hubby: How are you feeling, sweetheart?
Mim: Ok, I guess. Well, not really.
Hubby: Are you still dizzy?
Mim: yes.
Hubby: Does your throat still hurt?
Mim: yes.
Hubby: Do you need mum to take you to the doctor?
Mim: NO!

So, there you have it :P We'll watch her close, but I'm going to hold off taking her in again until her ENT appointment. My mom said that they may have to do a culture of her ear to see what kind of infection she has and to determine the correct med to put her on. I'm going to mention it to the ENT.

Of course, if she spikes a fever, she's going straight away - whether she wants to or not.

Mum
Title: Re: Mini update
Post by: red_Dragon888 on January 11, 2009, 09:25:18 am: She is truly "Positively Beautiful." Get well soon young one.
Title: Re: Mini update
Post by: minismom on January 18, 2009, 06:25:42 am: Quick update. Mim has been off of her last round of antibiotics for 10 days. She complains that she's dizzy, but no more ear infections (yet) The appointment at the ENT was miserable and unproductive. He's on my replacement list. Suffice it to say that he wouldn't even look at her and told us to take it up with Doc. >:(

When we go back to Doc in March, I'm going to request a re-referral to her neurologist. She hasn't had an EEG in nearly 5 years (maybe 6?) and she needs one. Some of her earlier ones showed deep brain seizures. We were told she'd outgrow them and there was nothing that could be done about them. However, we have been noticing starring spells where she blanks out on us. Coupled with the constant dizziness, that seems now unrelated to ear infections (or at least not 100% related), I'd feel better with an EEG. I have called Doc to get the referral early, but of course, you all know how that goes.

She is a mystery and an anomoly, but one way or another, we're going to get this figured out.

Mum (who will be accompanied by Hubby in March to ensure that I'm not escorted out by security.
Especially after the incident involving the afore-mentioned ENT)
Title: Re: Mini update
Post by: AndyArrow on January 18, 2009, 06:35:27 am: Thanks for the update and tell her we all are thinking about her and hoping she'll be better soon.
Title: Re: Mini update
Post by: next2u on January 19, 2009, 12:37:34 am: definitely keep us updated. here is a big ol hug for you & mini : )
Title: Re: Mini update
Post by: Jeffreyj on January 19, 2009, 02:18:14 am: I hope she is doing better the poor sweet thing! Did you say she was on ZERIT? Most of my Dr's are against that, they blame zerit and DDI for my bad case of neuropothy. I hate to cause you any more trouble , but I have heard nothing but bad things about zerit for the past 20 years or so. God bless. I hope she gets well already!
Title: Re: Mini update
Post by: Seadickrun on January 19, 2009, 03:53:41 am: I am very very sorry to hear about Mini's troubles and I feel guilty complaining about my life after hearing about her issues. She's much tougher than I could hope to be and please tell her that I think she is very brave - I am scared of needles and hate to get blood draws.

Reading about her ear infections gave me a crazy thought. My ex-wife's brother had the same chronic ear/sinus problems all through his childhood and went through so many antibiotics that he was running out of options. When he got to college a dentist yanked out his wisdom teeth and all of his ear/sinus issues went away. So he called my ex and told her to do the same (she had similar problems but not as bad) and had the same great results.

Now, I am NOT suggesting that we yank a child's teeth to solve ear/sinus problems but I wonder if a dentist might think that some kind of mouthwash at night might have a similar beneficial value without the invasiveness of surgery. Perhaps you can talk to a dentist or perhaps we have one here in the forums that could weigh in on my crazy thought.

And as for that ENT, I would report that one to a department of health and immediately replace them with someone who has the slightest compassion for your child's serious health issues. That one sounds too bothered to do their job. It would have taken less time to look in Mini's ears than to discuss it and I would have wanted to cover my bases as a doctor just to make sure that I wasn't missing something.
Title: Re: Mini update
Post by: minismom on January 19, 2009, 08:16:37 am: Sea, my child is wired crooked..lol. She LOVES having her bloodwork done. We have to go up to the doctor's office to get "pretty" bandaides, because the lab only has ugly ones. Then, after a ride back down in the elevator, she hands her papers to the lab receptionist, asks how everyone is doing, and sits down. When they call her name, she goes in, without me :(, tells them which arm to take it out of, jumps down from the chair, tells everyone bye, and away we go. I'm a different story. I break out in sweats, my heart rate jumps, and I have to lay down because I gray out. I'm a chicken when it comes to needles and avoid them at all costs.

Jeffery, you have no idea what great issues I have with Zerit. I sent you a PM to explain our Zerit journey.

She is brave, indeed, and had no problem expressing her feelings about the ENT who wouldn't even look in her ears. But, she took in stride and was glad that she at least got a Happy Meal out of it (with apple slices - no carmel sauce - and 1% chocolate milk - no fries or pop)

Mum
*edited because I forgot my name..lol
Title: Re: Mini update
Post by: minismom on January 25, 2009, 07:17:53 am: Just a real quick note. Mini woke up this morning asking if I can take her to the doctor - her ears are hurting again. I'll call the clinic today and see if they can get her in this afternoon. If not, I know they can see her tomorrow at 7am. the appointment will be followed by a VERY NASTY letter to the ENT and Doc.

I'll let you know what happens.

Mum
Title: Re: Mini update
Post by: Ann on January 25, 2009, 07:33:03 am: Oh Mum, that just sucks!

I'm starting to think a few nasty letters to your state medical board wouldn't go amiss either.

Or at the very least, a few sticks of dynamite delivered to the ENT via FedEx.

Please give Mini a hug and a "hope you feel better soon" from me.

And a hug for you too.

Ann
xxx
Title: Re: Mini update
Post by: red_Dragon888 on January 25, 2009, 08:28:52 am: xoxoxoxo
Title: Re: Mini update
Post by: minismom on January 26, 2009, 11:20:22 am: Just home from yet another visit to the clinic. Same old story: double ear infections and strep'
(again >:() The doctor talked with me for about 20 minutes and the office is going to make a referral to 2 different ENTs. They should call by this afternoon to let me know when the appointments are. 2 referrals were made so that I could interview and choose which one I liked. Yes, that is supposed to be explained to them.

The doctor did make an idiotic mistake for which she will be forgiven - this time only. She gave Mim a Rx for a round of antibiotics with a refill. I was told to finish this round, wait 5 days, then fill the next round and complete it. This should keep her infection-free long enough for us to get into the ENT. I SPECIFICALLY asked if each round was 10 days so that Mim would be on a 25 day round. She said yes. Well, she was wrong. Each round is only 5 days, for a total of 15 days, not 25. Also, this is the med that I told her I didn't want because 5 days doesn't work and usually allows something else to slip in underneath it (like the pneumonia in December). If Mim does well, then all will be fine and forgiven. If not, she'll be the next to get a nasty phone call.

On the way over, she asked if this time they would put tubes in her ears. I told her not this time, just more medicine and yogurt. She asked when someone was going to do something. I had to tell her that I didn't know but I'd make sure they listened this time. Next on the agenda, another call to Doc that I'm certain will go unanswered.

Mum
Title: Re: Mini update
Post by: aztecan on January 26, 2009, 11:41:45 am: Mum,

That really sucks. >:(

Let mini know that I am keeping her in my thoughts and will send lots of happy - and healing - energy her way.

Give her a hug for me too.

BIG HUGS,

Mark
Title: Re: Mini update
Post by: pozniceguy on January 26, 2009, 12:14:42 pm: so sorry to hear about the continuous issues with the ears..I really relate to that problem I have had ear problems since 5 yrs old.....been through the tubes..every possible med both oral and shots....to this day I use specially formulated drops that are prepared by a compounding pharmacy.. I hope she and you find some relief soon.....

all my best thought and well wishes to you both

Nick
Title: Re: Mini update
Post by: PeteNYNJ on January 27, 2009, 10:49:15 am: give mini a big hug for me :)
Title: Re: Mini update
Post by: BT65 on January 27, 2009, 01:58:21 pm: Oh dear, mum. I usually look for your posts in our women's forum and find out about Mini there. I'm glad I clicked on your thread here. Please give Mini a huge hug and kiss from me and tell her she's got something coming in the mail (I'm mailing it today). :)
Luv, hugs and kisses,
Betty (and Poppy)
Title: Re: Mini update
Post by: minismom on January 28, 2009, 09:01:50 am: Headaches and ears still hurt. I had to put numbing drops in her ears last night so she could sleep. The tears were pouring and there was not much else I could do. We have 6 inches of ice-covered snow and reports tell us to stay home. I put in a call to see if they'd change her antibiotic to whatever it was that she had 2 times ago. It's the only thing that seemed to work. I also asked that a note be put in her file NOT to give her this antibiotic again - it never works. Yes, I feel properly stupid for not recognizing the name of the med and insisting on a different one when we were there on Monday. These tears could've been avoided. (yep, Mikie, guilt)

Here we go...again (still, never ending :-\)

Mum (who's just this side of discouraged)
Title: Re: Mini update
Post by: minismom on January 30, 2009, 06:00:47 pm: Ask me if I'm pissed >:( Never mind, I'll just tell you - I'm thoroughly, totally, unequivocably PISSED OFF!

I called the clinic yesterday to see about changing Mini's antibiotic. They called back today and are now REFUSING to write her another prescription. The nurse said that they have written her 3 prescriptions for antibiotics in a month and won't write her any more. I tried to explain that I'm not technically asking for a 4th round, I'm asking them to change her 3rd round because they gave her meds that WON'T WORK! I don't understand why they won't switch it considering the doc wanted to put her on a 25 day round this time. >:(

WOULD THE DECENT DOCTORS WHO DON'T HAVE A GOD COMPLEX AND WHO ARE WILLING TO LISTEN AND ACKNOWLEDGE THAT AS HER PARENT, I KNOW MIM BEST - PLEASE STEP FORWARD!!

Why is this so difficult? Seriously, am I the one who's out of her mind here? Am I being impossible to work with? I truly don't get it.

On an upswing, I called the ENTs that got our referral Monday. Guess what. You got it - the lady said that she had a huge stack of referrals on her desk and hasn't gotten around to any of them. I told her that this was her lucky day because she can pull Mim's referral and make the appointment right now. That will leave her 10 whole seconds to do whatever she wants later. The doctor is fitting us in at 1:30 on Monday (my birthday - maybe I'll get the gift of a decent doc). But, I was warned that he has surgery in the morning and so I'll have to wait but "we close at 4, so he'll see you before then". If he doesn't, at least I have one more ENT to interview. ;D

Other than that, not much more to report. Her ears feel better, but her head has never stopped hurting. We're giving her Ibuprofin but I'm afraid she has a sinus infection and nothing to give her until Monday. This seriously sucks!!

Mum
Title: Re: Mini update
Post by: Robert on January 31, 2009, 02:15:05 am: Quote from: minismom on January 30, 2009, 06:00:47 pm

... Her ears feel better, but her head has never stopped hurting.... This seriously sucks!!
Mum

Aw mum...now my head hurts.

Not to put any more pressure on you or mini but once mini starts feeling better, I know all of us here on the boards will feel better too.

give her a kiss for me.

robert
Title: Re: Mini update
Post by: minismom on February 03, 2009, 08:09:54 am: I wish I had better news. We traversed through an ice / snow mix into town for Mim's appointment only to be told by the receptionist that the doctor was stuck in surgery and wouldn't be in the office for at least 2 more hours. Needless to say, we left. I was angry, at first, but I'd like to think that if he was in surgery with Mim, he'd take his time with her and not rush to get back to the office.

Anyway, we have another appointment for tomorrow afternoon. Mim was upset because she REALLY wants to have surgery and feel better. But, again, nothing I could do but drive home and promise we'd try again Wednesday.

Mum
Title: Re: Mini update
Post by: pozguy75 on February 03, 2009, 12:04:59 pm: Wow, Mum, this sucks!!

Give Mini a big for me, ok??

Mini, get well soon honey!
Title: Re: Mini update
Post by: minismom on February 04, 2009, 06:33:56 pm: The good news is: WE LOVE DOCTOR DANIEL!!!!!!!!!!! ;D

Mini's tempanogram and hearing test came back normal. So, no residual side-effects of the infections. Her ear drums are healthy, so no problems there. Her nasal passages are swollen, so we have Astepro spray to use 2x/day.

When I asked him about her constant headaches and dizziness, he did some testing to see if she had a form of vertigo. He didn't seem to think she did, but noticed that she couldn't track his fingers with just her eyes. His fingers went to the left, and her eyes went to the right. Mini said she didn't know what was wrong with her eyes or why they weren't doing what she wanted them to do. YIKES!

On the 17th, she goes back to have a VNC. Basically, they put hot and cold water in her ear then make her dizzy. We were warned about the possibility of projectile vomitting during the 90 minute test. This is supposed to test her vestibular system and further test for vertigo. She'll see Doc Daniel the 18th.

He listened, he responded, and he didn't treat me like I was an idiot. I told him that as long as he remained on my good side, I'd have 5 other kids to add to his patient roster.

Thanks for your well wishes, positive thoughts, and support.
Mum
Title: Re: Mini update
Post by: RapidRod on February 04, 2009, 06:39:25 pm: Mum, does Mini have her eyes tested regularly? I go in once a year for them to check my eyes because of HIV. I don't have to have them to put cold in my ears to make me puke, just mention it and I can do it. As long as they have to clean it up it wouldn't bother me. ;)
Title: Re: Mini update
Post by: minismom on February 05, 2009, 06:51:26 am: Rod, she goes to an eye specialist (who happens to be her PID's husband) every 6mths for an eye exam. He dilates her eyes every visit to make sure they're healthy not only because of her HIV but because of her diabetes as well. She goes back the end of June and I'll ask about her tracking. He's never done the tracking test with her - but he's going to start ;).

We'll have the VNC results before she sees her PID on March 6th. I'm still going to ask for a neuro referral for an updated EEG. I'm still convinced that this is related to her 8+ years (and counting) on Zerit.

Mum
Title: Re: Mini update
Post by: lavidaloca on February 10, 2009, 03:08:40 am: Mini's Mom,

I rarely post to forums or message boards. However, I feel blessed to have read about this little angel. She is a "hero" in her own right... and so are you!

It is easy to become caught up in my own traumas. You and Mini have helped me tonight.

If you happen to read this, I just wanted to say "Thank you"!

... always

La Vida
Title: Re: Mini update
Post by: minismom on February 10, 2009, 11:30:05 pm: Vida, thank you for your very kind words. I am humbled and speechless.

Welcome to the forums! I look forward to hearing more from you. When you are comfortable, please join us in the positive women's forum. We just talk about our daily lives, ups and downs, whatever is on our minds. It's composed of amazing women from all around the world. You would be most welcomed.

Mum
Title: Re: Mini update
Post by: minismom on February 14, 2009, 09:00:09 pm: Headaches are worse and her tracking is horrible. Tonight she said that it sounded like the wind was blowing through her head (oh, the jokes that could be made about that!) and it feels like people are using her head for a punching bag. I checked her tracking and it frightens me. I handed her a book to have her read, and she did fine. So, not quite sure what to make out of it all.

Has anyone else experienced this level of headaches, dizziness, and "wobble" eye? I researched vertigo and it didn't say anything about it causing headaches or that it effected tracking.

Tuesday is her testing and it can't come soon enough for me.

Mum
Title: Re: Mini update
Post by: Ann on February 14, 2009, 09:12:51 pm: Could this be migrane? What she describes is how I could describe my own migranes.
Title: Re: Mini update
Post by: minismom on February 14, 2009, 09:53:28 pm: Call me stupid, but a migraine has never entered my mind. I wouldn't have thought that wee ones can have migrains. When I have one, my forehead swells. I can only function long enough to pop migraine meds and crawl into a cold bed in a dark, quiet room. She's not acting like that, but it's something I'll definately look in to. Huh, who would've thought? Thank you sincerely, Ann :-*

Mum
Title: Re: Mini update
Post by: Ann on February 15, 2009, 08:20:43 am: I got migraines when I was young. They weren't recognised as such then - they were assumed to be sinus headache, but the sinus meds made no difference. I only realised what they were when I started getting them again when I was pregnant with my daughter. After delivery, I didn't have any for years, then started getting them again. They went away again, and came back a few years ago. Sometimes I'd have them for days at a time. When I get them now, I take a drug called Sumatriptan and it takes care of it.

However, the package insert says: "There is little experience with sumatriptan tablets in children under 18 or those over 65 so it is not usually prescribed for these age groups."

But it's definitely something to talk over with the doc. Good luck!

Ann
Title: Re: Mini update
Post by: lonewolf on February 15, 2009, 11:20:11 am: I think we all should encourage Sesame Street to rename Kami to Mini.
Mini and mum and hubby, you are all such an encouragement to us.

That little precious one has no comprehension how many friends she has, and how she is affecting our lives with her love and strength!!

WE LOVE MINI :D WE LOVE MINI :D
MINI FOR PRESIDENT :D

Love, papa Bruce
Title: Re: Mini update
Post by: Ann on February 15, 2009, 01:03:11 pm: Quote from: lonewolf on February 15, 2009, 11:20:11 am
I think we all should encourage Sesame Street to rename Kami to Mini.
Mini and mum and hubby, you are all such an encouragement to us.

That little precious one has no comprehension how many friends she has, and how she is affecting our lives with her love and strength!!

WE LOVE MINI :D WE LOVE MINI :D
MINI FOR PRESIDENT :D

Love, papa Bruce

Or lobby Sesame Street to create a poz American character called Mini? :)
Title: Re: Mini update
Post by: Miss Philicia on February 15, 2009, 01:22:02 pm: Ann, do you recall if migraines and cluster headaches are the same or different? I'm too lazy to google at the moment, but I had a close friend who suffered for years with undiagnosed cluster headaches, which eventually led IIRC to a bi-polar diagnosis and with proper medication he's perfectly fine now, as well as being HIV+. Of course, I guess this could be a lot of things going on.
Title: Re: Mini update
Post by: Ann on February 15, 2009, 02:56:02 pm: From what I remember, a cluster headache can be a migraine but isn't necessarily. I think you can get cluster headaches from taking painkillers for ... headaches. One of life's paradoxes.

I know my migraines tend to come in clusters, but many people's don't.
Title: Re: Mini update
Post by: PeteNYNJ on February 16, 2009, 01:05:11 am: Mini Mom

Echoing Anne's advice - I have terrible migraines and it always happens behind my right eye - I feel like balloon head and I want to take my eyeball out ( the pressure is insane). Something to talk to the doctor about.

Hope our little gal feels better :)

Pete
Title: Re: Mini update
Post by: minismom on February 16, 2009, 09:40:08 pm: Just a quick blurb. Tomorrow is Mini's "puke" test (VNG). When we see Daniel (the ENT) on Wed, I will mention migrains.

I went to pick up Mini's Zerit today and the pharmacy (who's been filling her Rxs for 8yrs) informed us that their distributors can no longer send them Zerit pills. :o We counted up what we had left between the medicine cabinet at home, the doses I keep in my purse, and the doses we keep at my parents' house. We have enough for 6 days before she runs out. The pharmacist said she'll try to get the generic form, but insurance won't pay for it. I told that we couldn't either. She then said that if insurance won't pay for it, then she'll try to find the liquid (YUCK!).

I asked her if I could get a copy of the letter from the distributor to fax to her doctor. I see it as a step to getting her off of it and onto something else. The best the pharmacist could do was call the doctor and tell her that they could no longer get Zerit. We'll see what happens. Can you say a Zerit burning party???

Mum
Title: Re: Mini update
Post by: YaKaMein on February 17, 2009, 12:00:40 am: Yikes, Mum. Wish you and Mini could get a break! Sending good thoughts to ya. YaKa

P.S. If I were on Zerit, I'd share some of mine with her. Damn pharmacy distributor!! How crazy is that?
Title: Re: Mini update
Post by: Ann on February 17, 2009, 12:14:35 pm: Mum, just some further info about migraines...

They typically present on one side of the head or the other, however, it is also possible to get them at the back of the head. Sometimes mine are on the right side, sometimes at the back. When the pain is really bad, it can be difficult to tell which section of the head is primarily affected because it gets to feeling like EVERYTHING hurts.

Migraines are also known for causing weird eyesight effects, but not everyone gets this. I have to wonder if Mini's tracking problems aren't part of this.

The closest I come to eyesight problems is that my right eye tends to close up (not swollen, just difficult to open) and I'm a bit more sensitive to bright light. Only one time out of the hundreds of migraines I've had did I experience "auras", where you see halos of colours. That was probably the worst one I ever had - I was banging my head on the wall because believe it or not, the pain from banging my head was better than the pain from the headache. That was one terrible night!

Migraines can sometimes cause nausea, but not always.

I'm telling you these things because some doctors will automatically rule migraine out if the eyesight problems and nausea aren't present - but that's not necessarily true.

Good luck with the latest round of appointments. Hope Mini gets some relief and SOON!

Ann
Title: Re: Mini update
Post by: minismom on February 17, 2009, 03:03:41 pm: Thank you for the encouraging words, Yaka. Ann, thanks for the additional information. I've printed off everything that you and Philly have posted here so I don't forget anything when we see the doctor tomorrow.

Mim came out of her test in pretty good shape. I wish I would've had a camera to take a picture of her in those HUGE goggle-looking things she had to wear. Some of the tests I couldn't watch for fear I'd be the one who got sick. I brought an extra shirt for each of us and a dose of Pepto in case she needed it after the test.

The last test consisted of laying her in a semi-sitting position, putting a shield down on the goggles which left her in complete darkness. Then, cold air was shot into her ears, 1 at a time. When they did the 1st ear, she got scared and started to cry. The ladies were VERY patient with her, taking off the goggles and letting her take as long as she needed to settle down. It took a bit, but we'd brought some of her Littlest Petshop animals, so I put one in each of her hands, and rubbed her arms. When the testing started again, the tester kept Mim's mind going by asking her about her trips to the beach, her favorite animals at the zoo, ect. After each ear got blasted with cold air (27C), the test was repeated with warm air. All together, the testing lasted just over an hour.

I was VERY proud of how well Mim did. Her belly never got upset and we left in the same clothes we arrived in. She was able to describe what she was feeling / seeing (sometimes spots before her eyes). Tomorrow we see Daniel to get the results and see where we go from here. Mim came home, ate well, and then slept for an hour. While doing her dance homework, she was FOGGY! Bless her heart, her brain must have been scrambled pretty good.

OH, and about the Zerit. The phamacist found a distributor that had the capsules. Hubby will be picking them up after dance class tonight. :-* Yaka for offering to share ;D

I'll keep you all informed with what the doctor says tomorrow.

Mum
Title: Re: Mini update
Post by: minismom on February 18, 2009, 02:08:19 pm: Well, damn. I'm actually at a loss for words at the moment and trying not to ramble. Here are the results of the VNG exactly as they appear on the 1st page of the report (with explainations in parenthesis)

RESULTS:
Gaze and Positional: no spontaneous or positional nystagmus. (this means that she was able to keep both eyes pointed forward. It also reflects the validity of the test)

Saccade and Tracking: abnormal - no measurable responses obtained.

OPK (Optokinetic - tracking a moving dot): Very poor ability to track optokinetic stimulus in 20deg / per second, therefore increased speed was not attempted.

Dix Hallpike: negative (this tests for benign paroxysmal positional vertigo)

Calorics (cold / warm air in the ear): no significant unilateral weakness or directional preponderance detected. (If this test was abnormal, it would show that the issues were caused by a vistibular system malfunction which would be treatable and reversable with vestibular rehab. However, because this test was normal, well...it's not good)

IMPRESSION:
Abnormal VNG evaluation with all positive findings consistent with CNS lesion. (damn!)

She has an MRI scheduled for Monday at 2pm (pre-op stuff at 11:45) They'll be looking for lesions, doing some kind of contrast dye, looking for tumors, checking her optic nerves, and getting a "good look" at the base of her skull and top of her spine, and looking for taxoplasmosis. We should have results back by the end of next week.

On a good note, in his report that will be sent to Doc (PID), he's recommending that she is taken off of Zerit.

At this point, that's all we know. I'll post more when I know more. I just can't process all of this right now.

Mum

edited because I keep remember things.
Title: Re: Mini update
Post by: Inchlingblue on February 18, 2009, 02:56:36 pm: minismom: I'm relatively new on here and have read many of your posts. You're an inspiration, I can literally "feel the love" you have for Mim as I read your words. One thing I wanted to mention for a while but didn't because I figured it had already been discussed in the past is the fact that Mim is on Zerit, which made no sense to me. I suppose there must have been a good reason for it so I never inquired. It's great that it seems there will be a better alternative for her now. The fact that the pharmacy can't get it any longer is probably a blessing in disguise. Big cyber-hug to you and to Mim.
Title: Re: Mini update
Post by: umfowabo on February 18, 2009, 04:14:08 pm: Quote from: minismom on February 18, 2009, 02:08:19 pm

IMPRESSION:
Abnormal VNG evaluation with all positive findings consistent with CNS lesion. (damn!)

But doesn't M have cerebral palsy. I think I got that right. So she would have CNS lesion just depends where it is which causes the problems in the motor system. I learned quite a lot about that for a course I did about cerebral palsy and motor function problems in children. It was for work.
Sorry if I didn't understand what you wrote though, maybe you meant as well as the CP related.I hope not, I expect you must be very worried about all of this. Tell her hello from me and she was very brave to have those tests done. I don't think I could have put up with all that definitely not when I was her age. I hope all the other tests go ok for her next week and that her new doctor can help her feel better and tell you more about what's causing these things. And zerit is the one or one of the ones which made Kate have really bad neuropathy and fat loss I think so I hope M doesn't have to use that any more. Lots of love to all of you especially M and spiderman.

Matthew
Title: Re: Mini update
Post by: #1 mom on February 18, 2009, 04:43:29 pm: There are no words that I know to help. Sending a hug to you and mini from Lucas and I. We'll keep praying.

[attachment deleted by admin]
Title: Re: Mini update
Post by: minismom on February 18, 2009, 05:35:26 pm: I forgot to tell you all that the pharmacy "found" the generic form of Zerit and got insurance to pay for it. So...we'll see.

My sweet Matthew: Mim was diagnosed with CP when she was 4 (CP is technically any neuro-muscular disorder diagnosed by the age of 2 - so, go figure). Her MRI when she was 8mths showed that she had delayed mylenization. Her next one at 19 mths old showed that her mylen had "caught up". The one that she had last January (2008) showed no demylenization. So, if it's CNS lesions causing her new issues, then they are new. Zerit has destroyed Mim's fat - she's got lipoatrophy and lipodystrophy.

Inchling, I've taken issue with Zerit for the last 16mths or so. Her PID won't take her off of it even though her genotyping showed a resistence in 2002. As far as I'm concerned, she's been on Kaletra monotherapy since last February. We've begged and pleaded, her PID refuses to change anything. We see her on 3/9 - either Mim's meds change, or her doctor changes.

Mom: Give Lucas a giant hug from his future hunny :-*

Mum
Title: Re: Mini update
Post by: Miss Philicia on February 18, 2009, 07:46:57 pm: Mum and Mini: I'm rooting for both of you a lot and thinking every good thought that I can. You all have been dealing with way too much these past several months.
Title: Re: Mini update
Post by: Snowangel on February 18, 2009, 08:02:34 pm: Mum and Mini- You are both in my thoughts in prayers. You both are incredibly strong. I hope you can get some answers on Monday.
Snow
Title: Re: Mini update
Post by: Robert on February 18, 2009, 10:44:45 pm: It's been a long, cold winter Mum. all my prayers for littlemini.

robert
Title: Re: Mini update
Post by: AndyArrow on February 19, 2009, 12:24:37 am: My heart goes out to you and your family.

AA
Title: Re: Mini update
Post by: mjmel on February 19, 2009, 01:28:30 am: Heartful of prayers and well-wishings for this little one. So sorry to read of all these troubles lately.

I know without a doubt she has the best parental units at her side. The BEST.

Mike
Title: Re: Mini update
Post by: minismom on February 21, 2009, 07:42:12 pm: Real quick update. Mini's MRI was moved up from 2pm Monday to 8am Monday. We'll be leaving the house at 5:30a to arrive at the hospital by 7:30a. They are foregoing the pre-op "stuff". She'll be NPO and should wake up with quite the appetite.

Mum
Title: Re: Mini update
Post by: lonewolf on February 21, 2009, 08:29:26 pm: My thoughts and prayers. Hello Mini, lots of hugs too. Papa Bruce.

Please you all rest and have a safe trip so early on Monday Morning...
Bruce
Title: Re: Mini update
Post by: PeteNYNJ on February 21, 2009, 10:34:40 pm: Big hugs from Pete :)

Mini is a trooper!
Title: Re: Mini update
Post by: minismom on February 23, 2009, 12:45:30 pm: Well, we made it. The 1 1/2hr commute this morning had us driving through some really nasty snow. I had to park in the farthest spot you can imagine and traverse through the ice covered parking lot about 3 blocks to the hospital. But, we made it with about 13 minutes to spare.

Mini brought in her favorite dog, Lacey, who got a small gas mask to bring into the imaging room. I was able to go with Mini and hold her hand while they gave her the gas to put her to sleep before starting the IVs. The anesthsiologist was wonderful! He asked her how old her dog was. "Four". Where are ou going to eat after your MRI? "Four" Oh, really, what are you going to eat? "Lacey because she's four". Then, she was out.

She woke up freezing despite the warmed blankets she was covered with. It didn't take her long to sit up and drink some apple juice and take her meds. She was far to wobbly to walk, so the anesthesiologist got her fresh hot blankets and a wheelchair. I pushed her up the 3-story ramp from the basement to the elevators, then down to the ground floor. I called Hubby on the cell phone and a security guard stood with her while I made the 3 block trekk back to the car.

Yes, she got her Chick-fil-a. Which, Uncle Mark, consisted of 4 nuggets, fruit, and 1% milk. ;D The results are already in the computer so as soon as Dr. Daniel gets done with his surgeries for the day, he'll call with the results. If not today, then definately by tomorrow.

I'll post as soon as I know something. I need a nap.
Mum
Title: Re: Mini update
Post by: Longislander on February 23, 2009, 11:42:54 pm: Mum,

I read this thread daily, and really don't have anything to say except I'm wishing the best for Mini, and hoping this gets sorted out soon!

Loved the anaesthesiology part!

Paul
Title: Re: Mini update
Post by: Peter Staley on February 24, 2009, 09:14:43 am: I read this every day as well, and am hoping for the best. Mini (and her mom) are definitely helping me keep life's little things in perspective these days.

xoxo

Peter
Title: Re: Mini update
Post by: minismom on February 24, 2009, 02:04:39 pm: Thank you so much Peter and Paul (now all we need is a Mary ;)) Yesterday was exhausting to say the least. But, the afternoon brought out the sun and melted much of the snow. I barely made it through 4hours of dance class, then home and bed.

2 quick updates. First, I've lost my mind. I've been giving the wrong dates for Mim's appointments. I think I've been saying 3/6 and 3/9. Not sure where that came from. Her lipid doc / fasting lipid panel / reg. labs are 3/3 (Tuesday). Her PID appointment is Friday, 3/6. Not a biggie, but a mistake I caught.

Second, Dr. Daniel's nurse called yesterday. She said that Dr. D looked at the MRI and "saw nothing scarey." I asked what constituted "scarey", was is something that would freak her out if it was her daughter? She said she didn't know. All she could tell me wat that Dr. D said he saw nothing scarey but he's waiting for the official report that should come out either Wed. or Thurs. then he'd call. I'm assuming that what he didn't see was a tumor. I''m guessing a tumor would be easier to see than lesions, right? Based on what the report says, she'll be scheduled next week for an EEG, and taxoplasmosis will be added to her lab slip. Something is going on - I'm just glad he's willing to look for it.

She had a good day yesterday - ate us out of house and home as usual and slept well. Today she's still complaining about her head. She cried earlier asking why her MRI didn't make it stop. I had to explain, again, that it was a test to find out what was causing her headaches and dizziness, not to "cure" it. She cried for a bit, then said she understood. Her IV sites are hurting, too. They aren't bruised up and look good, so not sure where that's coming from. She did well with her studies - not too much fog.

We'll see how she does at dance class. Her teacher knows everything and just loves her to death. That helps, too.

As soon as I hear anything, I'll be sure to let you all know.

Mum
Title: Re: Mini update
Post by: AlanBama on February 24, 2009, 02:40:34 pm: Keeping our little dancing dolly in my daily prayers, especially during this season of Lent...

Happy Mardi Gras Mini! (and you too Mum!)

Love,

Alan
Title: Re: Mini update
Post by: Robert on February 24, 2009, 09:24:03 pm: Quote from: minismom on February 24, 2009, 02:04:39 pm
Thank you so much Peter and Paul (now all we need is a Mary ;))

Not to worry. There are more Marys here at AidsMeds than you can shake a stick at.

Quote
Something is going on - I'm just glad he's willing to look for it.

Aren't we all? Dr 'D' sounds like my kind of Dr.

Quote
She had a good day yesterday - ate us out of house and home as usual and slept well.... We'll see how she does at dance class. Her teacher knows everything and just loves her to death. That helps, too.

And let me just add, thinking of our mini and her dancing feet makes puts a big smile on my face.
Title: Re: Mini update
Post by: minismom on February 26, 2009, 08:50:06 pm: Didn't hear from Dr. D yet. I knew that Thursday is his surgery day, so I honestly didn't expect to hear anything. Still would've been nice, though. If he doesn't call by tomorrow afternoon, I'll give his office a call. Maybe the official report isn't done yet. Maybe, maybe not...I'd just like to know.

Fog was pretty thick today. She had a hard time walking and had to hold on to our hands or the buggy. She's complaining about her eyes and brain hurting. She usually takes everything with a grain of salt. She's getting fed up with it. I don't blame her. It just breaks my heart to see it bother her so much. :-\

Mum
Title: Re: Mini update
Post by: minismom on February 27, 2009, 03:58:39 pm: I just got off the phone with Dr. D's nurse. She read the MRI radiology report and it said:
"IMPRESSION: No abnormalities detected" Curious that they refer to it as an "impression" and not a "diagnosis". But, then again, doctor's "practice" medicine. :-\

Dr. D is going to take the weekend to figure out what to do next. He reviewed the VNG results and agrees with the initial impression. If he sticks to our original conversation, he's going to write up a lab slip to check for taxoplasmosis. She'll also be referred to a peds. neurologist for an EEG. If we can't get one scheduled quickly enough, he'll schedule it himself. We're going back to her vision specialist to see if he has any suggestions. Even though Dr. D says that wouldn't have caused her VNG results.

I wish you all could see how she (doesn't) track. Her eyes go all kinds of whacky ways, but she can read. ( ???)

I've run out of ideas. Any other suggestions for what it could possibly be, I'm open.

Mum
Title: Re: Mini update
Post by: Inchlingblue on February 27, 2009, 04:17:07 pm: Quote from: minismom on February 27, 2009, 03:58:39 pm

I wish you all could see how she (doesn't) track. Her eyes go all kinds of whacky ways, but she can read. ( ???)

So even though her tracking is abnormal she can still read? Is that itself some sort of clue as to what it might be? Is her reading ability the same as it used to be before these problems started? Shouldn't her abnormal tracking (as reported in the VNG results) cause her to not be able to read well or at all? Hmmmmm
Title: Re: Mini update
Post by: minismom on February 27, 2009, 04:41:29 pm: Inch, that's exactly what my first thought was. She was diagnosed (via neuro-phycological exam) as being, among other things as dyslexic, dysgraphic, and apraxic nearly 2yrs ago. She just started reading last Spring (end of 2nd grade) We tried to teach her to use her finger to help her keep her place, but that made things worse. Then, we used a view-mirror starting with words then lines. Without them, she can't keep her place.

She has long-term / short-term memory issues, and while she can answer questions about a story, she can't sequence the events that happend in more than a series of 3 - 5 (but she knows the capitals of 40 states and can find them on a blank map - go figure) When she reads, her eyes get tired fast. After reading, whether it's a story or doing a worksheet, she has to take a break before moving on to something else. Otherwise, it's just not happening. Inspite of having spelling tests everyday, she can't spell worth a flip, either.

Some days are better than others in terms of "fog" and fatigue, but her tracking stays the same. It doesn't get better / worse as the day progresses. Her VNG was in the morning and she did no school work prior, so the results weren't aggrivated by her being tired. Like I said, I'm at a loss. She's a complete anomoly.

Don't get me wrong, I'm THRILLED that the MRI didn't show anything. I just wish we could figure out what was causing her tracking issues and constant dizziness with headaches. She has CP, which is a neuro-muscular disorder. Eyes are controlled by muscles. Although I've never heard of CP affecting eye muscles, I wonder if that's what could be causing the problem? I was hoping for some answers - and, for her, relief.

Mum

edited to add: we're not sure if her reading is the same now as before this started. Truth is, we don't know when it started. Her ENT picked it up because I mentioned the dizziness / headaches. We wouldn't know about now had she not had all those blasted ear infections which prompted us to have a serious conversation with her about the importance of her telling us when she's hurting and where. That's when she told us about the headaches and dizziness. All of that prompted a visit to the ENT. Otherwise, we STILL wouldn't know. Yes, I feel stupid and guilty.
Title: Re: Mini update
Post by: Inchlingblue on February 27, 2009, 05:06:15 pm: Do not not not feel "stupid and guilty," you are doing an amazing job and you take very good care of M.

I'm no Doctor but CP can cause certain eye problems, I had a friend with CP years ago. The dizziness and headaches could also be side effects of her meds. For whatever it's worth, I'd try to get her off the Zerit and onto something better. It sounds like an uphill battle with the doctor you mentioned who wants her to stay on Zerit. Has he given you one good reason as to why? If what you said in an earlier post can be confirmed and she is indeed resistant to Zerit that would make it a moot point with the doctor, wouldn't it? What doctor would continue to prescribe something that isn't working and may possibly be doing more harm than good?

Stay strong, you're doing a great job!@
Title: Re: Mini update
Post by: minismom on February 27, 2009, 05:18:11 pm: We have proof that she's resistent to Zerit. Her PID ordered the genotyping in 2002 when Mim was 17mths old. Doc has known since Feb. 2002 and continued to prescribe Zerit. We just found out her genotyping results in Jan. 2008. Silly us thought that Doc wouldn't prescribe anything that Mim showed a resistence to. The only drug in that class she's not resistent to is Viread which hasn't been approved for peds in the US (but has in the UK) Of course now Doc is back peddling that genotype testing isn't reliable. But, she sure took Mim off Susteva fast enough last year and Mim had NO resistence to it.

We are working out the details for her to see an HIV-specialist in another state. The tricky part is to get insurance to pay for it since we're taking her out of state. And, Doc is the only PID in our state. The issue should be resolved within the week (fingers crossed).

I'm glad you mentioned CP affecting eyes. I honestly had never heard of that. I wonder if it matters what type of CP a person has. She was diagnosed (at age 4) with spastic diplegic CP. Very intresting and definately something that I'm going to mention.

Thanks again! Have a great weekend.
Mum
Title: Re: Mini update
Post by: umfowabo on February 27, 2009, 07:53:46 pm: Actually it does I can't remember it all now unless I go look it up but basically the higher the score on that motor function classification system the more likely certain visual function problems are. And there are also different eye problems that happen more with certain CP types like strabismus and esotropia and other ones. I think it's actually very common for children with CP to have problems with processing,focusing tracking and things like that. So maybe this is all more to do with that than HIV. Or some of both I guess you don't know unless you go to an opthalmologist who knows about CP as well. I think there are lots of things they can do if it is related to CP like visual therapy, special lenses and other things. You said "We tried to teach her to use her finger to help her keep her place, but that made things worse" that might be because you asked her to do a fine motor movement with a visual concentration task which would be difficult for her. Sorry I can't really help more with information about this but the kids I work with mostly are Autistic spectrum so that's what I know more about.

But I'm very glad they said they didn't find anything nasty on the scan at least. I think you've all got more than enough to deal with without anything else. I hope mim feels better soon and they can work out what's wrong.And you can take her to see this new HIV consultant who might know more what he's doing.Hello to everyone from me.
Matthew
Title: Re: Mini update
Post by: Ric Wilke on February 27, 2009, 10:04:10 pm: Mini and Mum,

We love you both.

Ric & Thom with Miss Tucker, too.
Title: Re: Mini update
Post by: minismom on February 28, 2009, 05:46:20 am: Matthew, how are you sweetie? Good to hear from you again! I should be picking your brain about our Spiderman ;)

According to her VNG, she has no strabismus or esotropia. When she had to keep her eyes fixed in one location, she could do that. That was the first test they did. Crap! Now that I've written that, I'm second-guessing the whole muscular issue. I'm also thinking no, now, because when I mentioned vision therapy, he said that the things she tested negative for (bad grammer, I know), were linked to neuro and not to vestibular. I just answered my own question, didn't I. I'm still going to mention it to both doctors next week. Have I mentioned how much I REALLY hate this virus?

Ric, Thom, and Miss Tucker, hun, we will always love you guys!

Mum
Title: Re: Mini update
Post by: #1 mom on February 28, 2009, 06:46:36 am: Hi mum,

Lucas has trouble with his eyes secondary to his CP. He has intermittent exotropic strabismus, which means that sometimes one of his eyes will roll out torward his ear. It is a combination muscle issue, brain/muscle communication problem. He is able to track, but when he looks at a distance one of the eyes rolls. Initially it was not caught. Lucas has a broad nose and deep canthic folds so we were told what we were seeing was just an optical illusion and there was no real problem. Also, when he was younger this did not happen as often. As he's gotten older his eyes roll out further and more often. I don't know if that helps or not?

Lucas Mum
Title: Re: Mini update
Post by: minismom on March 02, 2009, 02:01:37 pm: Just a really quick change. I just got a call from PID's nurse saying that Doc is sick and won't be there Friday. The nurse wasn't able to reschedule the appointment. I'm hoping our prespective new doc works out then we won't have to reschedule.

Mini still has her fasting lipid / HIV labs tomorrow morning. She'll then see her lipid doctor. Again, I'll have all of her numbers except her VL tomorrow and will be sure to post them. We're hitting the road no later than 6am.

Mum
Title: Re: Mini update
Post by: Jeffreyj on March 08, 2009, 09:29:19 am: Mini, You need a reward for all of the crazythings you have been going through lately! Hugs from the Arizona.
Hey, I had that same ear test. It turned out i had severe vertigo. I would lose my horizon, and would have to lay down all the while puking my guts out. I was so exhausted I had to crash and sleep for 3 hours right next to the toilet.

After about 10 of these "attacks" they gave me that test you spoke of. It turned out I had a rare disease called 'Miniers Desease. I needed surgery. It was called a "vestibular nerve section". It was hell, but I'm better now. I know its a long shot, but it is something worth mention. And guess what? I was on zerit for years..
I love you and you're power and strength inspire me on a daily basis!
Title: Re: Mini update
Post by: Lou-ah-vull on March 08, 2009, 11:54:21 pm: I also have Meniere's disease, although luckily without vertigo. I wear hearing aids due to substantial hearing loss and take a diuretic every day to assist with swelling. It took forever for the ENT to diagnose Meniere's and I probably have been afflicted with it most of my life (I am 53 now.) It never hurts to ask about this.

Like others, I follow all of Mini's threads regularly...anyone that can climb those pyramids in Mexico City is deserving of our attention and admirnation (and her mother who climbed up there with her!)

Gary :D
Title: Re: Mini update
Post by: minismom on March 09, 2009, 10:25:30 am: Good morning, guys! Sorry it's taken so long to post anything. The a/c adapter cord for our laptop got distroyed by one of the kids so we couldn't use it. Instead of buying one in town, Hubby ordered one from a guy we thought was in California. Turns out he's in California, but the cord he's sending us is in China. It's estimated arrival date is between the 11th and the 20th of this month. Our desk top is in the office and rarely "free".

Also, I was hoping to be able to post some answers, but as of now, I have very few. We did go to the lipid doctor and had all her labs drawn. Usually I get her ID labs back when we see the lipid doc (except for the vl). However, this time, they were still "pending". I've called and left messages (yep, here we go again) since Tuesday afternoon and no one has returned the calls. I'll call again this morning. They are still not telling me when Mim's PID will be back and rescheduling appointments. I'm hoping to get everything approved for her NEW (yes, I said NEW) ID doc before then. In the meantime, I really need those numbers. I'll post her lipid panel numbers later today - they're in my purse in the car and it's storming. Not real good planning on my part, I know.

Thank you for your suggestions of Meniere's. I've put in a call to Dr. D asking him about it. This is his surgery day, so not sure when we'll hear back from him - probably tomorrow. At least he returns my calls. We're also setting up Mim with a peds. neurologist and an eye specialist. Her eyes are doing some really odd things (other than wobbling) and her vision goes in and out. She says that it sounds like there's wind blowing through her head (no jokes, please ;)) and sometimes like someone is whistling. That sounds like tinnitus to me. I also mentioned it to Dr. D, but not sure how they test for that.

Her falling has picked back up and her gait has gone wacky again. But, it will be ok. I know that somewhere out there are the answers. The trick is just finding them. I'll let you all know as soon as I find something out.

Mum (who's heart breaks everytime Mim BEGS to go see a doctor so she can get "fixed". "I'm just so tired of it hurting, mom")
Title: Re: Mini update
Post by: Lou-ah-vull on March 09, 2009, 03:08:34 pm: I am no ENT ( major disclaimer there!) but those are classic Meniere's symptoms! The tinnitus is so hard to describe (the sufferer is aware of it, but no one else is!) and the sense of fullness adds to the problems. Additionally all kinds of vestibular woes lead to problems with balance, tracking, etc. If I recall correctly, a Meniere's diagnosis requires three of the four classic symptoms: serious hearing loss (this is frequently temporary), vertigo, tinnitus (self reported of course) and a feeling of fullness in one or both ears. As I recall they use an MRI to rule out tumors, etc (it sounds like they have already done that with Mini.)

I know some of the treatment options sound downright scary. However, with Meniere's these are not the first options. Diuretic, steroids (sometimes drops or injections) are much less invasive methods. One step at a time! If you look at the support site I PM'd to you (www.menieres.org) you will find all kinds of information. Beware of the so-called homeopathic cures involving a mass of supplements. I tried them (as have others) and besides a great deal of expense, they were of no benefit. The daily diuretic and careful monitoring of salt intake seems to have been the best options.

I know you will keep us posted...we all care!

Gary
Title: Re: Mini update
Post by: minismom on March 10, 2009, 08:26:09 am: I spent much of my day yesterday googling, printing, and researching Meniere's. It sounds an awful lot like what she's experiencing. She has some symptoms of both atypical, so we'll see. I'm not sure what other tests she'll need to have. She's had her VNG and an MRI and initial blood work for toxoplasmosis. Dr. D's nurse called yesterday to talk to me about what I was "seeing" and "thinking". I faxed them some of the information that I had and spoke to her about the sections I felt were most relevent to Mim. She said she'd put everything on Dr. D's desk and he'll give us a call tomorrow (today). So, we'll see.

I did find out that Mim was treated with IV "Gent" for 4wks to combat 4 of her gram-negative blood infections. Another very interesting find considering it's an ototoxin.

I just noticed how many people have been reading this thread and, honestly, I'm totally overwhelmed.

Mum
Title: Re: Mini update
Post by: pozniceguy on March 10, 2009, 10:55:51 am: I am not surprised at the people who are interested in her and your situation...we all have grown to love her and hope she is responding to the treatments... we want to see you both again this summer.....

Nick
Title: Re: Mini update
Post by: minismom on March 12, 2009, 08:51:38 am: I'm pissed. I'm frustrated. And I'm just about undone. Why is it so freakin complicated? Pick up the phone, dial 10 numbers, and tell me what my child's lab numbers are. Am I asking too much? I just left yet ANOTHER message for someone to PLEASE call me and let me know Mim's ID numbers. Will they call me back? I can only hope.

Hubby will be near the hospital today seeing clients. I called and asked if they would print out Mim's labs so he can pick them up. I was told that he couldn't have them unless I signed a release! What the heck? He's her FATHER, for crying out loud! He's in the system, can tell them everything in the computer, has picture ID, so what's the issue? The best they could do was have me leave another message with the same secretary / nurse that's already gotten 8 messages.

Oh, and if that's not got your hyde chapped, get this. I got a phone call yesterday UNscheduling Mim's neuro appointment. They said that a doctor has to refer her. They couldn't tell me that BEFORE they scheduled her? I begged them not to wipe out her appointment and put in a frantic call to Dr. D. The secretary said that she'd call and make the referral.

Her PID is still not back - I have no idea where she is - and isn't allowing appointments to be rescheduled. Her primary practice is CF, with ID being secondary. Another doctor is covering her CF patients, but not her ID patients. In other words, there's not a soul in this state that I can call to talk about Mim's numbers and changing her meds.

She's still in pain and is BEGGING me to go back to a doctor - any doctor. Her head hurts and she said it sounds like someone is breaking glass in her ears. There's not a thing I can do for her except make more stupid phone calls that aren't getting me anywhere. I keep promising her that I'll find someone to make it better and, so far, I haven't been able to keep that promise.

I'm pissed. I'm frustrated. I'm completely undone.

Mum
Title: Re: Mini update
Post by: pozniceguy on March 12, 2009, 10:17:15 am: So sorry to hear of the frustration with the system and the non responsiveness......particularly upset that Mini is still hurting in so many ways,,,I know it is a long shot but "back to the ER?"" is that even and option?? I wish I could do more than just sympathize with your frustration but be assured all the good vibes that can be mustered are coming your way...I think you need a hot soak and glass of wine before you attempt more contacts with the bureaucracy...

Love an hugs to both of you

Nick
Title: Re: Mini update
Post by: newt on March 12, 2009, 02:15:03 pm: Bummer. Prayers, and just a touch of anger - matt
Title: Re: Mini update
Post by: minismom on March 12, 2009, 03:50:39 pm: I just posted her ID labs in the other thread. I assume everyone that reads that one reads this one and vice-versa. I tried to keep my emotions out of the other thread, but I didn't do so well in that aspect. Bottom line is that her CD4s are trending down and her PID is MIA. I just kept telling whoever the doctor was that called that she's only 8..she's only 8. She's going through hell and she's only 8. I was trying not to cry. Didn't do so well there, either.

He agreed that she needs to be seen and said he make some calls. I'm not holding my breath.

At the moment I'm numb. But in the end, we will be standing.

Mum
Title: Re: Mini update
Post by: Longislander on March 13, 2009, 12:48:06 am: Mum, I know it's little consolation , but we're all here with you, as much as we can be. It's absolutely horrible what you and Mini are going through, and I don't even know what to say. It breaks my heart to think a child is begging to see a doctor, and they really couldn't care less about it.

Just know that we're here, following and hoping for answers right alongside of you.

Paul
Title: Re: Mini update
Post by: minismom on March 13, 2009, 04:47:15 pm: Sorrow may last for a night, but JOY comes in the morning! I would like to introduce you to Mim's NEW ID doctor: Ellis Frazier. Our 1st appointment with him is March 26th at 1:30pm. He's about 4 1/2hrs away, so we'll be leaving at 9am. I'm very excited.

Mim said that the noise in her ears is quieter today but it didn't make her headache go away. We told her that we found another doctor that we believe will be able to help her. She smiled. Haven't seen that in a while. Things are moving.

I want to say thank you, with all my heart to mjmel who not only put us in contact with Dr. Frazier, but acted as "middle man" between us. Without you, hun, we would still be at zero. I owe you a HUGE pot of gumbo! (made with your okra and tomotoes ;))

Mum
Title: Re: Mini update
Post by: Jeffreyj on March 13, 2009, 11:32:46 pm: Her smile when you told her about the new DR signals to be VERY GOOD things are ahead for all of you. Keep the faith ans remember what a wonderful and amazing person you are.
Title: Re: Mini update
Post by: minismom on March 15, 2009, 07:04:09 am: Just a quick update. Mim crawled into my lap Friday night and told me that her ears were quiet. She said that her brain didn't have any noises in them and she said everything else sounded "weird". By yesterday, however, the noise was back. This time she said it sounded like the ocean in a seashell. I asked her how she felt. She told me she was fine and that the other sounds outside of her brain sounded normal again. Makes me wonder how long she's had the tinitus. At least now she's able to tell us what's going on.

She has a million questions about her new doctor. We've yet to tell her she'll no longer see her PID. Despite everything, Mim still totally LOVES Doc. Of course she has no concept of the issues that have arisen. Those are better kept between the adults. We're hoping that since Doc has gone MIA, that this will be a natural, flowing transition for her.

We're attempting to prepare her for a change in meds. We've told her that her new meds may make her belly feel yucky for a while, or make her have wierd dreams, or feel tired, but that it will only last for a while. We've made her promise that she'll tell us how she feels so that we can write it down and tell Dr. Frazier - it will help him know if her meds are working or not. We told her it may be hard at first, but she'll just have to be patient and trust that it will all work out in the end.

We've also told her that for a while she'll need extra labs done to see how the meds are doing. Odd child that she is, the extra labs didn't bother her a bit. She loves having labs done - I'm not kidding. Only person I know who gripes that it takes too long to have them done again.

So, that's where we are. Having conversations no parent should have to have with their 8yr old. And an 8yr old dealing with things that no adult should have to deal with.

Mum
Title: Re: Mini update
Post by: AndyArrow on March 16, 2009, 10:35:21 am: It's amazing how strong you both are. I'm so glad Mini is going to see a new doctor soon.

I'll be sending hugs & lots of positive energy you way.

Hugs,
AA
Title: Re: Mini update
Post by: minismom on March 18, 2009, 07:30:48 pm: We got a phone call today and our neuro appointment is Monday morning at 9am. I'm expecting her EEG to be scheduled soon after. Our ENT nurse called and got our appointment moved up - by nearly 3 months! That makes 2 appointments next week. Things are finally moving forward!!

Mum
Title: Re: Mini update
Post by: minismom on March 23, 2009, 02:21:19 pm: Whew! Neurology appointment is done. We talked for about an hour. It's the first time we weren't hussled out in 10 minutes. Bottom line: she's scheduled for an EEG and another neuro appt. on 5/4. Then, on 5/14, she has an appointment with an eye specialist. The neurologist decided to "deal" with the starring episodes first to rule-out siezures, since that could be the answer to her memory and falling issues. Hubby and I are keeping a callender of when she has headaches, dizziness, and tinnitus from today until 5/4. Once all the info is gathered, we'll see what's next.

Thursday we're off to see our new HIV-specialist, then April 7th back to ENT.

We're going to whip this - whatever it is.

Mum
Title: Re: Mini update
Post by: newt on March 23, 2009, 05:36:05 pm: i wish you were my mum (when I was 8, bit late now I guess) - matt
Title: Re: Mini update
Post by: YaKaMein on March 23, 2009, 06:15:55 pm: Quote from: minismom on March 23, 2009, 02:21:19 pm
We're going to whip this - whatever it is.

Mum

... and many of us are cheering victory for you and Mini ... :D - YaKa
Title: Re: Mini update
Post by: minismom on March 24, 2009, 07:37:06 am: Was a wee bit stressed last night. Lots of thoughts and decisions plauging me. I was rewarded with the rare opportunity of solitude. I wraped in a blanket and sat on my front porch, in the dark, overlooking the mountains. The sky was clear and full of stars. Just me, a mug of hot tea, the night critters, and the stars. It was so quiet and peaceful. I cried a little, hummed a bit, and cleared my head. I was further rewarded that night with 6 1/2 hours of sound, undisturbed sleep.

This is such a crazy journey. Certainly one that I never dreamed I'd be embarking on. Life's funny like that, though, isn't it? We're dancing and laughing and joking surrounded by the people we love. Then, the phone rings and, in that instant, we're hurled into a nightmare where we'll never laugh or joke or love again. We try to get out of it, working hard to change our direction. Days, months, years, that never change. When we can't take another step. When we stop crying because there are no tears left, but plenty left to mourn, life provides a respite. A place under the stars where nothing exists but our thoughts and emotions. In that quiet place we cry. But not for long because then we begin to hum. And smile. And laugh. And understand that the dancing and laughing and joking and love still exist. We still exist. In that moment, we begin again to live.

I wil stumble. I will fall down. But, I will not be moved.

Mum
Title: Re: Mini update
Post by: Lou-ah-vull on March 25, 2009, 01:21:24 am: Mum,

You might recall these two passages I read from Angels in America at the memorial service in Mexico City. They seem to resonate with what you just posted. Here they are again:

Harper (in the Tropopause):
When we hit thirty five thousand feet, we’ll have reached the tropopause. The great belt of calm air. As close as I will ever get to the ozone.
I dreamed we were there. The plane leapt the tropopause, the safe air, and attained the outer rim, the ozone, which was ragged and torn, patches of it threadbare as old cheesecloth, and that was frightening.
But I saw something only I could see, because of my astonishing ability to see such things:
Souls were rising, from the earth far below, souls of the dead, of people who perished, from famine, from the war, from the plague, and they floated up like skydivers in reverse, limbs all akimbo, wheeling and spinning. And the souls of the departed joined hands, clasped ankles and formed a web, a great net of souls, and the souls were three atom oxygen molecules, of the stuff of ozone, and the outer rim absorbed them, and was repaired.
Nothing’s lost forever. In this world, there is a kind of painful progress. Longing for what we’ve left behind and dreaming ahead.

Prior (at the Bethesda Fountain):
The fountain’s not flowing now, they turn it off in the winter, ice in the pipes. But in the summer it’s a sight to see. I want to be around to see it. I plan to be. I hope to be.
This disease will be the end of many of us, but not nearly all, and the dead will be commemorated and will struggle on with the living, and we are not going away. We won’t die secret deaths anymore. The world only spins forward. We will be citizens. The time has come now.
Bye now.
You are fabulous creatures, each and every one.
And I bless you: More life!
The Great Work Begins!

Gary
Title: Re: Mini update
Post by: minismom on March 25, 2009, 06:59:21 pm: Tomorrow morning we are heading out to meet Mim's new HIV-specialist. I'm nervous and excited. We've put all of our eggs in one basket, so to speak. Our hopes are soaring high and I just don't want to be disappointed.

We're going armed with my notebook full of possible med combos, med history, genotyping, VNG results, research news, and various other amounts of information. We have phone numbers, map quest, snacks, drinks, umbrellas, insurance card, current med. info., and rain jackets already in the car. Cell phones are charging. The kids' school work is copied, sorted, and ready for tomorrow. I can't think of anything that may have been forgotten.

Be assured I will bare all. If not tomorrow, then certainly on Friday.

Mum
Title: Re: Mini update
Post by: Robert on March 25, 2009, 11:54:16 pm: mum....

i'll be looking for the calm tomorrow.

all my best to you and littlemini.

robt
Title: Re: Mini update
Post by: minismom on March 26, 2009, 09:31:26 pm: We made it home about 7:30 tonight. It was a long day but SO worth every minute. My head is still spinning from all the wonderful information we were given. The doctor was with us for a full 2hrs. For the first time in nearly 9yrs, I know that I was heard. Every word we said was taken into consideration. Every concern, every opinion, every question, every everything.

The doctor is looking at 4 possible drug combos to put Mim on. For now she's still on Zerit and Kaletra, but that is going to change when we see him again April 15th. He did suggest that we forego the Zerit burning and just dump them in the trash. ;)

He also suprised us by finding a significant heart murmur. 10 doctors - 10! - since December (the last one being Monday - as in 3 days ago.) and none of them found it. Even Hubby heard it. :-\ Now she's got an EKG scheduled for April 24th.

The trip wore her out, but she was in good spirits. It took her about 2 minutes to knock out. She's sleeping soundly.

Thank you to mjmel for lunch today and for a million other things you did to get us to this point.

Thank you to everyone who sent well wishes and thoughts for safe travels. WE are moving in the right direction....finally.

Mum
Title: Re: Mini update
Post by: Inchlingblue on March 26, 2009, 09:40:23 pm: Quote from: minismom on March 26, 2009, 09:31:26 pm
He did suggest that we forego the Zerit burning and just dump them in the trash. ;)

woo hoo@@!!

So, even though she doesn't have the new combo yet, he said to throw out the Zerit? It would make sense if he did, given her resistance to it.

Will this be her new doctor from now on?
Title: Re: Mini update
Post by: Longislander on March 26, 2009, 11:01:40 pm: I'm happy the day didn't turn out to be another day of frustration for you! The doc sounds great. Now when do you get to sleep??

Paul
Title: Re: Mini update
Post by: minismom on March 27, 2009, 08:21:12 am: Zerit's days are numbered! Hubby and I were braced for an arguement, but there was none to be had. He looked at her mutations, said that she shouldn't be on it, asked if we minded him taking her off, we both laughed, and I handed him the bottle. For the next while, we playfully pushed it back and forth acrossed the table to each other.

I forgot to tell you: he wrote GOALS! Yes, goals. Stuff that we (not he) wanted to have happen during, what he called, her drug therapy. I have them on our fridge. The VERY FIRST goal was to get her off of Zerit. Then in teeny weeny print, he wrote "but keep taking it for now". It made me laugh.

Longislander, I'll sleep sometime after May 14th (the date of her last appointment). Actually, I slept very soundly last night. My body aches from sitting in the car, but it doesn't bother me a bit. And, you MUST love a man who wears a lilac colored oxford with confidence. ;) and LOVES Star Trek ;D

Mum
Title: Re: Mini update
Post by: aztecan on March 27, 2009, 10:51:16 am: Hey Mum,

I have been following this with much anxiety and anticipation - though I doubt no where near the amount you have been dealing with.

Heavens! A doctor that actually listened to you?!?

I am delighted, both for you, because I know how frustrating this has been, and for our Mini, who deserves to be treated with respect and dignity but hasn't been getting much of that from her former docs.

Give her a big hug for me.

HUGS,

Mark
Title: Re: Mini update
Post by: Robert on March 27, 2009, 11:45:12 am: There are so many good things to read into this post. And I don't mean to highlight one at the expense of others but

Quote
Thank you to mjmel for lunch today and for a million other things you did to get us to this point.

What a great testamonial for AIDSMEDS and the fine people who post here and care for each other.

robert
Title: Re: Mini update
Post by: pozniceguy on March 27, 2009, 12:46:33 pm: wowweee great news , I felt the same way when my Dr took me off the Zerit...I am very interested i what he reccommends for replacement...... as for Mike I couldn't agree more he is a very generous and caring person........I wish you all the best possible result and so glad that you found a Dr who will listen to you...too bad he is such a trip away...but that means a few lunches with Mike....

Big hug to Mini and you ....

Nick
Title: Re: Mini update
Post by: minismom on March 27, 2009, 06:31:39 pm: Robert, I couldn't agree more. There are so many quality people that we have gotten to know and love dearly. My angel Matt (newt), you know we love you. Kate, we still feel her with us. Rob (Scudd44) who has my heart. Of course Ann and Jan and all my ladies over in the forum. My honeys from AMG - MC. I hate to think where we'd be without you.

Mum
Title: Re: Mini update
Post by: mjmel on March 27, 2009, 09:09:43 pm: Now, listen up....all I did was connect those four (papa, mom, mini, Fraizer) and the rest is Faizers' talent, skill, and dedication. Of course Mom's relentless determination to keep pushing forward and not accepting BS or anything less than quality care is the true 'Queen Bee'. :)
You know, I have been working on this for about a year now......and it finally happened! Mini + a doc who gives a damn.
The reward --> great joy.
Yippee!

Mike
Title: Re: Mini update
Post by: Lou-ah-vull on March 28, 2009, 01:14:14 am: I follow this thread with more intensity than Louisville basketball (a lifetime passion for me...and tonight we are one game away from the Final Four.) This is GREAT news and a wonderful sign of hope. I so appreciate that you take the time to keep the rest of us posted!

Gary
Title: Re: Mini update
Post by: minismom on April 01, 2009, 07:55:16 am: Tuesday, April 7th (where did March go?), we're back to the ENT. Not sure what exactly he's going to do. We are going to have a serious conversation about Meniere's Disease. Before we can get the diagnosis, I'm sure he'll want to wait for the EEG results and a report from the eye specialist mid-May.

One of the doctors suggested that her tiredness, dizziness, and headaches could be caused by her murmur. After the EKG, depending what it shows, she'll have a stress test to see how it reacts during various activities. Just another test, I guess.

She seems to be doing better. She went straight from dance class to baseball practice last night. This morning her legs are hurting but she's in good spirits. I've noticed her tinnitus is worse in the afternoon. Not sure if this is typical or if it's because she's "busy" with school in the morning and can ignore it. In the afternoon, things are more peaceful here, so she notices it more. In short, I'm thinking it's always there and she's noticing more when her mind isn't busy.

Hope you all are having a great day. Step by step things are coming together.

Mum
Title: Re: Mini update
Post by: Andy Velez on April 01, 2009, 09:36:47 am: What a siege this has been, Mum. It's good to know she's getting back to some of the things she loves doing and a semblance of her everyday life. We'll take whatever blessings and good come along.

Thinking of you all and praying.

Cheers and hugs.
Title: Re: Mini update
Post by: minismom on April 02, 2009, 06:06:04 am: In all the craziness, I just realized that I had yet to post the combinations that Dr. F is looking into for Mim. Atripla (because it contains Viread), or Truvada + Kaletra, or Insentress + (something), or something that includes Reyataz.

13 days until she gets her new combo. I'm anxious, but nervous. We have 2 vacations planned literally back to back. We're going to Hershey for a week in May. Then home 8 days, then off to the beach for a week. Her big dance concert will be 3 wks into the change. I'd really like most of the side effects to be gone by then. Or, better yet, just never show up.

I've been reading about sleep problems that people are having on Atripla and Insetress. Although lack of sleep = long, whiny days, it seems to be the "easiest" side-effect to manage. We can re-arrange her schooling schedule, add time for extra naps, or just sit and rock for a while.

Mum

edited to add: back in post 104, I told you about the doctor who called to tell me Mim's ID numbers and how he was "shocked" by her downslide of T-cells and "agreed" that she needed to see a doctor ASAP. Here's a suprising update: I haven't heard a word from him. One day I'll be able to look back on all of this and laugh. Today is not the day.
Title: Re: Mini update
Post by: Peter Staley on April 02, 2009, 10:46:24 am: Quote from: minismom on April 02, 2009, 06:06:04 am
I've been reading about sleep problems that people are having on Atripla and Insetress.

Mum -- I don't think Isentress has any sleep issues. Certainly, Atripla can, but not Isentress.

The sleep issues with Atripla come from the unique central nervous system (CNS) side effects of Sustiva (one of the 3 drugs in Atripla). Isentress has not been associated with CNS side effects.
Title: Re: Mini update
Post by: Denver Toad on April 02, 2009, 11:59:21 am: Mum - Isentress and sleep... Don’t put too much weight on anecdotal internet evidence. I’ve been on Isentress/Truvada for about a year now, I’d heard/seen the same rumors floating about that sleeplessness is a problem with the drug. I’ve never had a sleeplessness night caused by the combo. I’m also a peer counselor and have talked to more then a few others on Isentress combos and have yet to run across a documentable case of Isentress caused insomnia.

Better still my CD4’s have finally, after five years of assorted combos, taken a significant upward jump. From a count of 156 six/eight months ago to a 318 count as of last month. (My ID Dr and I had begun to resign ourselves to the reality that my immune system may have been too damaged to recover. I went undetectable within two months of starting meds, so we knew the prior meds were suppressing the virus) When the up-trend started I held my breath, I’d seen small upward swings from quarter to quarter with other combos, but nothing had been sustainable. Couple the numerical improvement with absolutely no side effects I couldn’t be more pleased with the combo.

Bottom line, I don’t believe you have a concern. Keep Mini busy, blissful, and bouncing about as she’s best able and sleep will follow.

LOL – I’d love to have the sleep back I had as an eight year old… no worries, no cares, no monsters under the bed, just me and a bed full of stuffed friends…..

Best of Luck to Mini and Mum
Todd
Title: Re: Mini update
Post by: newt on April 02, 2009, 12:14:52 pm: It is strictly speaking too early to say what Isentress will do in terms of side effects. It is important to note and give weight to individual's experience as the side effect profile emerges, but not pay too much attention to it until enough people have taken the drug to form a rounded view.

On the drug choice, I personally would go for Isentress or perhaps Prezista + something. I would deffo not return to efavirenz. I would avoid Reyataz until the heart murmur question is resolved.

Isentress, while off-label, has distinct advantages in terms of lipids. Prezzie's not too bad tho, only uses 100mg Norvir in the best formulation. Also Prezista now has a good pediatric study to support its use.

All the best - matt
Title: Re: Mini update
Post by: Miss Philicia on April 02, 2009, 02:24:37 pm: Someone just posted in another thread about Isentress and sleep issues, but if you read the thread closer the cause is most likely their treatment for Hep-C. This is a primary reason to not go by things written on a message board, or at least read them with a skeptical eye.
Title: Re: Mini update
Post by: minismom on April 02, 2009, 02:41:54 pm: Putting her back on Susteva (or a drug containing it) isn't my first choice, either. The years she was on it, we watched her lipid panel jump WAY out of control. Just over a year of being off of it, and her numbers (except for that crazy jump in tris) look really good. Whatever side effects she had from it, we'll never know. She was a newborn so who's to say whether she woke up due to bad dreams, or because she was hungry? :-\

Matt, off label, heh? Has she ever taken an on-label combo? I believe I still owe you a tree - and a kiss ;) :-* What about keeping her on Kaletra? She's done so well on it and it would be one less med she'd have to adjust to. Also, as you've posted to me, it has a good reputation for getting into the brain. Considering her neuro issues, I'm thinking she needs all help her brain can get.

We counted up the Zerit we have left to see if by some miracle she didn't have enough for the next 13 days. Unfortunately, there are enough for those 13 plus 7 more. I wonder how big of bonfire we can make from 14 Zerit. ::)

I'll keep you all posted.

Mum
Title: Re: Mini update
Post by: Inchlingblue on April 02, 2009, 03:57:32 pm: Below is an excerpt from the results of a head-to-head study between Isentress and Sustiva. Insomnia is one of the possible side effects for each but it's very minimal and it's smaller with Isentress than with Sustiva. In other words, it has been known to happen but the probability is rather low:

Tolerability profile and effect on lipid levels
The most commonly reported adverse experiences in patients receiving ISENTRESS and efavirenz, respectively, were diarrhea (6.9 percent versus 10.5 percent), nausea (12.5 versus 13.2 percent), dizziness (8.8 versus 28.9 percent), headache (8.8 percent versus 23.7 percent), abnormal dreams (6.3 percent versus 18.4 percent), insomnia (8.1 percent versus 10.5 percent) and nightmares (0 percent versus 10.5 percent). Neuropsychiatric adverse events, which included abnormal dreams, depression, nightmare and suicidal thoughts, were reported less frequently with the ISENTRESS group compared to the efavirenz group, occurring respectively in 16 versus 32 percent of patients through Week 96; most of these had occurred earlier in the study by Week 48.

ISENTRESS had neutral effect on total and LDL cholesterol, or triglycerides. The mean changes from baseline at Week 96 for ISENTRESS and efavirenz, respectively, were +1.1 mg/dL and +24.0 mg/dL (p=0.002) for total cholesterol; -5.8 mg/dL and +4.4 mg/dL (p=0.045) for LDL cholesterol; +7.4 mg/dL and +13.0 mg/dL (p=0.017) for HDL cholesterol; -10.8 mg/dL and +13.4 mg/dL (p=0.145) for triglycerides; and -0.7 mg/dL and -0.7 mg/dL (P=0.689) for total: HDL ratio.

MORE:

http://www.pharmacistelink.com/index.php?option=com_content&task=view&id=10286&Itemid=9
Title: Re: Mini update
Post by: Miss Philicia on April 02, 2009, 04:34:05 pm: So how do we separate this out from things like that 70% of HIV+ patients experience insomnia (http://www.hopkins-hivguide.org/diagnosis/organ_system/psychiatric/insomnia.html)? I've had frequent insomnia for a decade, and changed meds 5 or 6 times over that span. I have a hard time pinpointing this on one specific mediation.
Title: Re: Mini update
Post by: minismom on April 06, 2009, 11:42:11 am: Guess who I just got a phone call from. Never mind, I'll just tell you: Dr. Fraizer, our new HIV-specialist. What did he want? Nothing much. Just to CHECK UP on Mim and see how she was doing! :o Good gravy you have no idea how wild that is to me. We went from *still* waiting for returned phone calls made since Sept. 09 to having a doctor who calls just to see how things are going even though we'll see him again in 9 days. I think we will arrive bearing gifts of homemade chocolate truffles. I can't get over it. Blows my mind. Seriously.

Tomorrow we are heading back to Dr. D's for a follow-up (ENT). I'll be sure let everyone know what happened.

A doctor that calls just to check in. Huh, who would've thought?

Mum
Title: Re: Mini update
Post by: AlanBama on April 06, 2009, 08:31:47 pm: I am just tickled pink that she has a REAL doctor now! WOO HOO. I agree with what others have stated, mjmel is a VERY very nice guy, and him helping you out with all of comes as no surprise to me.

Honey, let me tell you what to do with that excess Zerit: Grind it up into a fine powder; then bake it up into some brownies or cookies and take them to the a**hole doctor as a "farewell gift" for all his GREAT efforts on Mim's behalf.....

Love,

Alan :-*
Title: Re: Mini update
Post by: minismom on April 07, 2009, 08:16:42 pm: Some days it just doesn't pay to get out of bed. When we saw Dr. Fraizer on March 16, he noted that Mim's lymph nodes were swollen on the left side, but the right side was fine. He said we'd wait and see how they do. Today, Dr. D said that the nodes are her left side are significantly swollen and there are 3 smaller nodes on her right side. Now she's on Omnicef (250mg 2x/day for 14 days). If the nodes are nonreactive, then they'll have to be removed and biopsied. Or, if Dr. F decides they need to be biopsied, then we won't wait.

Mim called Dr. D after filling her prescription to give her a piece of her mind. He told her that he'd make sure she got pills and instead it was liquid. He wrote it for 250mg / dose and pills start at 300mg / dose. She asked if she could call him and let him know. I figured what the heck and dialed the number myself. It was really funny. She's still stuck with the liquid, but she feels better. ;D

Next bit of news. Dr. D has pretty much ruled out Meniere's Disease. Good news, right? It should be, except with the discovery that Mim's tinnitus is only on one side (her right), he's leaning heavily to frontal lobe siezures as the cause. If it was on both sides, it would point to migraine induced tinnitus. We'll know more after her EEG May 4th. We go back to see Dr. D May 12th.

Today Mim lost her glasses. Ok, truth be told, they weren't lost, she just couldn't remember where she put them when she took them off. Luckily we had an extra pair. Then, she forgot where she put her shoes. Those, we found. Now she's breaking into tears. It's going to be a very long night.

Mum
Title: Re: Mini update
Post by: Longislander on April 07, 2009, 08:29:48 pm: Mum,

Not what we wanted to read today, I think we were all praying for some real answers.
The glasses and shoes thing is pretty much any child stuff, but the rest of this, no child should have to go through. I'm glad she got to call the doc and give him a piece of her mind!

I wish there was something any one of us could do to make this all better.

If she does end up crying herself to sleep tonight, I hope she at least has sweet dreams~

Paul
Title: Re: Mini update
Post by: Robert on April 07, 2009, 09:37:01 pm: Quote
Those, we found. Now she's breaking into tears

mini, I understand. I'm a grown man and there are times I get so frustrated with everything involved with this stupid disease, including losing far too many things I also break down and cry.

It's just stupid how simple, everyday, ordinary things become hard. I hate it.

robert
Title: Re: Mini update
Post by: minismom on April 08, 2009, 09:44:23 am: Last night wasn't as bad as anticipated. She fell asleep quickly, waking up in decent spirits. We have no where to be today so PJs are the uniform of the day.

I emailed Dr. Frazier to update him about her appointment yesterday, the findings, and the addition of Omnicef. Haven't heard back from him but it's ok. He's called twice in the last 2 days, so he's off the hook for the email (for now ;))

Happy Passover!
Mum

edited to add that no hook is necessary: Dr. Frazier returned my email this morning. Someone must have tipped him off about the truffles. :)
Title: Re: Mini update
Post by: Jody on April 08, 2009, 06:47:54 pm: Hi mum...Sorry this ordeal has been going on so long...On this, the first night of Passover, though I am not a deeply religious man, I have been invited out to a Seder and am about to head out. Know that I will have Mini very much in my thoughts tonight...Can you tell Mini that Jody loves her this much (hands held wide apart) and that I can't wait to see her in Boston this summer !

Jody
Title: Re: Mini update
Post by: minismom on April 11, 2009, 08:22:19 am: Thank you, Jody. I passed on your message and your hug. Mim asked if that was from the really tall guy with the bandaides.

Took Mim and #2 to baseball practise last Thursday. It was really funny. Poor thing can't catch or throw a ball to save her life, but good grief she can HIT! She's not a very fast runner, but she can HIT! Our #2 (8 1/2mths older than Mim) is the exact opposite. He can't hit worth a flip, but can field the ball and throw from the fence to 1st base with no bounce. He's got quite the arm.

Prompted by an email from Dr. F, I asked Mim if there was anything she'd like to talk to Dr. F about when we see him on Wed. Without hesitation, she said, "I want him to make me not be a diabetic anymore." I wanted to cry. Of all the things that are going on, she want to be able to eat like everyone else. That's her definition of "normal". So different from mine.

mum
Title: Re: Mini update
Post by: minismom on April 14, 2009, 07:00:56 am: Tomorrow is the day. We'll leave our home sometime around 7am to make the 3hr journey back to Chillicothe and our new best friend Dr. F. Zerit's days are dwindling and I'm anxious to see the new combo he wants to put Mim on. A wee bit nervous about the nodes and what he'll decide to do about them. We were only presented with 2 options: leave them or have them removed. Needle biopsies weren't even mentioned.

Other than that, she's doing really good. Hubby took the kids roller skating last night and they had a blast. He said Mim went round and round all by herself. He also said that 3 boys gave her their phone numbers :o I asked her about it and she said, "Yeah, they did, but I threw them away. Why would I want to call a boy? It's not like they'd want to come over and play Barbie with me." That's my girl! ;D

Today will see me trekking myself to the doctor. My lungs are giving me fits again. I thought I could beat it myself, but it's just not going to happen that way. More steroids, more albuterol, more diflucan. Not my idea of a good time.

I'll post tomorrow night and let you know which combo Dr. F decided on. Have a great day!

Mum
Title: Re: Mini update
Post by: Longislander on April 14, 2009, 07:32:46 pm: Glad to read Mim's feeling a little better! 3 boys gave her #'s!!?? I'm gonna have to start hanging out with her~ ;)

Good luck with Dr F. tomorrow, and hope you get to feeling better yourself~

Paul
Title: Re: Mini update
Post by: minismom on April 15, 2009, 08:57:04 pm: May I introduce you all to Mim's NEW combo: Epzicom boosted with 3TC and Kaletra. ;D

She had a HLAB5701 test to make sure she won't have a reaction to the Ziagen part of Epzicom. We should have the results back in 5 - 6 days. She'll take 1/2 a pill of 3TC and Epzicom 2x/day for 3 days to reduce the side-effects. After that, she'll go to a full pill of each twice a day. Let the Zerit countdown begin....NOW!

We go back in 4wks for a check up and follow-up bloodwork. She'll have bloodwork here at home 6wks after that. Then, if her CD4s go back up and stay steady, then we'll move to appointments every 3mths (maybe 4, but couldn't sell him on 6mths :-\)

He also wrote her a prescription for OT / PT. There's a PT that's worked with her off and on since she was 8mths old. I'll set up an appointment tomorrow.

I'm doing a bit better. I'm still coughing and congested, but mostly at night. I slept a bit better, but still only for about 2hrs. Hopefully tonight will be better.

Mum
Title: Re: Mini update
Post by: AlanBama on April 15, 2009, 09:12:02 pm: Glad to hear about the new combo! I hope you get some rest tonight honey....you are a jewel.

hugs,

Alan

PS -- special hugs to my littlest angel :-*
Title: Re: Mini update
Post by: minismom on April 15, 2009, 09:26:51 pm: Aw, thanks, hun! :-* I just keep thinking that if I can just make it until May 20th ("last" appointment on the books so far), then we'll be off on a 2wk vacation of fun in the sun. It'll be nice to just put this behind us for a bit, even if it's waiting for us when we get home.

I'll probably end up back at the doctor tomorrow. I'm living on albuterol (mixed with eucaliptus oil) via my nebulizer, sinus/cough/chest/nose stuff that's nasty, and dyflucan. I need a steroid but hate taking them. My lungs are telling me to suck it up and get over it. :-\ Better to make the lungs happy.

I'm beyond impressed with this new doctor. He's just so human and honest and genuine.

Sweet dreams, Alan!
Mum
Title: Re: Mini update
Post by: Longislander on April 15, 2009, 10:57:53 pm: I don't know anything about this new combo ( or any other combo, for that matter!) , but I hope this is the one!

It's great to here that you guys are still loving the new Dr.! Is he cute??

Get yourself better, mum, two weeks in the sun sounds great!

Paul
Title: Re: Mini update
Post by: fearless on April 15, 2009, 11:38:28 pm: yay, Mini. new drugs, new drugs... here's hoping for no side effects and great results.

Mum - hope you feel better soon. your body is telling you it needs that vacation. relax and enjoy.
Title: Re: Mini update
Post by: next2u on April 15, 2009, 11:41:49 pm: yea for mini's new dr and some new found confidence. keep us posted : )~
Title: Re: Mini update
Post by: AndyArrow on April 16, 2009, 09:36:46 am: Great News on the new doc & combo. I hope these really help Mini and that you get yourself better real soon!

AA
Title: Re: Mini update
Post by: Snowangel on April 16, 2009, 11:26:12 am: I am so glad for you both that you have a new doctor and I hope the new combo works out for her.

I hope you feel better soon too.

Snow
Title: Re: Mini update
Post by: minismom on April 16, 2009, 02:55:08 pm: First, a quick disclaimer: She's NOT on 3TC boosted Epzicom. She's on Epzicom which is Ziagen AND 3TC in one pill. I was confused but our sweet doctor emailed me and explained my confusion.

Now, an update about me. I went to the doctor today and got some disturbing news. My chest x-ray showed "odd-shaped" pneumonia that may not actually be pneumonia. After a 14 day round of 5 meds, I'll go back for a repeat xray. If it is indeed pneumonia, then it will be gone. If not, then we'll discuss what steps to take to diagnos the splotchy masses that have taken up residence in my lungs.

Also found out why I'm getting hot when I cough. When my O2 saturation is up to 97%, my heart rate jumps to 184. As my O2 saturation goes down, my heart slows (to about 124 - still high, but not horrible) and I cool down. However, once it gets to around 93 - 94%, my heart rate goes back up. With any type of activity, my heart rate jumps higher as it's trying to make up for the lack of oxygen my poor lungs produce.

Not exactly what I expected to hear. I'll not pretend that everything is OK or that the news didn't hit me like a ton of bricks. Today, things are definately not OK. But, that doesn't mean that tomorrow won't be better. For now, I'm being a good patient and choking down 15 pills twice a day. Hubby and the kids are being wonderful and taking up the slack. I'm taking Ric's advice: I keep saying it until I don't cry anymore.

Mum
Title: Re: Mini update
Post by: RapidRod on April 16, 2009, 03:20:15 pm: You take care of yourself you hear? I had pneumonia once and I wouldn't wish that on my worst enemy.
Title: Re: Mini update
Post by: Assurbanipal on April 17, 2009, 10:58:59 am: Dear Mum

Been away and so happy to hear about Mini's new doc! but concerned about you. Please do take care of yourself. It is not enough to just take the pills -- pneumonia requires a LOT of rest too. From all the chat on here you may think pneumonia is mainly an HIV thing but it isn't. It is very dangerous if you do not take it seriously -- so please, rest up!

Hope you feel better.
A
Title: Re: Mini update
Post by: minismom on April 17, 2009, 04:14:21 pm: Got some preliminary results from Mim's blood work on Wed. They were EMAILED to me today. I could really get used this ;).

WARNING: if you have a heart condition, are prone to swooning, or have the vapors, DO NOT read the following message as it may induce increased heart rate, whooping, hollering, and sudden urges to high-five someone.

t-cells: (sit down....seriously) 1383!!!!!!!!!!!!!!!!!!!!!!!!!!!! :o Up from 630's a month ago. Just SEEING Dr. F raised her t-cells ;D. She's still getting off Zerit.

Chol.: 194 Triglyserides: 248
These tests were done non-fasting and about 15 minutes after eating lunch at Bob Evans ::)

I'm doing a bit better. It's not the prospect of pneumonia that had me worried. It's the fact that they're not sure what the masses are that are scattered about my lungs. But, worry will not change one thing, so I've chosen not to. I'm resting as much as I can and taking my meds like a good girl.

Have a great weekend! Love to you all!

Mum
Title: Re: Mini update
Post by: Longislander on April 17, 2009, 04:50:19 pm: totally jealous of those T-cells!! ;D

You're right about worrying, but do take good care of yourself and get as much rest as possible!
Title: Re: Mini update
Post by: minismom on April 17, 2009, 06:04:54 pm: I forgot to add that she went to the dentist today. She has a couple of cavities that will be taken care of in a couple of weeks, after her EKG. Because of her murmur, they pre-dosed her with Amoxil (x4) to prevent infection. I didn't know that most of the veins in your mouth lead to your heart. Anyway, they wanted to make sure that if she bled, the oral cooties wouldn't seep into her heart. Probably an overkill, but I was glad they were thinking. She'll take a dose of antibiotics an hour before her teeth are filled, too.

However, she ate a wondeful dinner, then threw it all up. I'm not sure if it's from the Amoxil, but I'm awfully suspect. It was about 2 1/2 hours after she was given the meds. Now she's laying beside me sleeping. It may be because she had the meds on an empty stomach - I was never told she'd have a pre-dose of anything. She's never done this before with antibiotics.

Of course, being Mini the veracious eater, she simply could have eaten too much. But, again, it's never bothered her before. Who knows? Certainly not me.

Mum
Title: Re: Mini update
Post by: minismom on April 20, 2009, 07:52:56 am: Life is moving forward. The next few days promise little more than rain and cold temps (highs in the 50's). My lungs aren't getting much better. Better temps expected the end of the week.

Mim is doing a bit better. Still fussy and foggy, but in good spirits. Her EKG is scheduled for Thursday, but we won't have the results until sometime early next week. Next Monday she'll have 2 cavities filled. We've talked about it and she's OK with it. Just a bit miffed that she can't have a Happy Meal after. Still waiting for Dr. F to let me know whether she needs to be pre-medicated for the procedure. I still think it's an overkill.

As always, I'll let you all know as soon as I do.

Mum
Title: Re: Mini update
Post by: RapidRod on April 20, 2009, 08:37:45 am: Quote
Just a bit miffed that she can't have a Happy Meal after. Still waiting for Dr. F to let me know whether she needs to be pre-medicated for the procedure.

Heck yes and get bubblegum favored gas too. Numb them gums before sticking them needles in there. Does it show I don't like dentists? :D
Title: Re: Mini update
Post by: AlanBama on April 20, 2009, 10:05:09 am: With her T-cells, I personally think the pre-dosing is unnecessary....I've lied a couple of times when I went to UAB's Dental School for work, and they asked me if I had followed "pre-dosing procedures".
DUH - you're there, you're sitting in that dentist's chair for the first time, how could you pre-dose? I guess they just assume all of us with AIDS have a variety of antibiotics laying around the house....

So "yes, I took my pre-dose". Whatever.....

Hugs, Alan

Hope you feel better soon!

PS - not a disclaimer for all pre-dosing! I contracted bacterial endocarditis when I had single digit T-cells, so if your T's are low, before dental work you probably do need it!
Title: Re: Mini update
Post by: minismom on April 20, 2009, 10:39:36 am: Alan, they said that the pre-dose was because of her heart, not her HIV. The hygenist said that the veins in the gums lead to the heart. If her gums should bleed, then the germs in her mouth could travel through the veins and into her heart. I didn't argue. However, after having her throw up everything 2 hours after taking the meds (and what seemed to me an over-done high dose) and her sleeping for 10hrs straight, I'm thinking they are unnecessary.

I'm inclined, as you were, to just say "yeah, whatever, sure she did." However, she'd be right behind me saying, "What meds? I didn't take any meds before we left the house." :-\ She won't be knocked out for the fillings - just numbed up. I'll be with her, she'll have her MP3 player to listen to, I think she'll be fine. Besides, she'll have a great story to tell.

Rod, I'm horrified of needles! The suggestion Thursday that I have a shot of antibiotic put me in a cold sweat, panic attack, tears, mumbling, you name it. But, for some odd ball reason, I DON'T mind shots in the mouth. I HATE doctors, but don't mind the dentist. Go figure.

Mum
Title: Re: Mini update
Post by: AndyArrow on April 21, 2009, 07:01:09 am: A big HURRAY for Mini's T-cell count.

I understand wanting to ditch the anti-biotics but I guess it depends on her heart. I have a friend who has an artificial heart valve (because of a congenital birth defect) but is otherwise healthy who always has to pre-dose before a trip to the dentist ... even if it's just a cleaning.

I hope you start feeling better soon!
AA
Title: Re: Mini update
Post by: YaKaMein on April 23, 2009, 11:51:24 pm: Mum,
Am so glad for Mini's new care. Now, make sure someone is taking good care of YOU.
Big hugs, YaKa
Title: Re: Mini update
Post by: minismom on April 24, 2009, 06:12:35 am: You are all officially invited to our 1st (and only) Zerit burning party! Dr. F called us (and e-mailed us) yesterday to let us know that Mim's enzyme test came out negative, so today she is officially OFF Zerit! Her new combo is Epzicom + Kaletra. She'll do 1/2 pill of Epzicom in the am and 1/2 in the evening for 3 days, then go to 1 pill in the morning. Her Kaletra is still twice a day. She'll go back to Dr. F on 5/20 for more blood work and a check-up.

Yesterday was also her echo. They took 117 pictures of her heart over an hour and a half period. The way she had to lay and twist herself, her feet kept falling asleep. But, she was a trooper and made it through the whole ordeal without a break. The hardest part was getting her to stop talking so the tech wouldn't lose the picture. Then cardiologist came in, took a peak and more pictures. She let us know that Mim will NOT need to be pre-dosed for procedures. The official report will be sent to Dr. F today - but all looks good.

Mim has her 1st scrimmage game tonight against her cousin's team. Tomorrow is opening day for baseball in our town and all 6 kids have games. Highs near 80 with lots of sun. 8) (finally!).

I am doing better. Lungs still feel a bit full, however. I have 2 more days on antibiotics, 4 more days of prednisone, and 6 more days of Dyflucan. Repeat x-rays 2wks from yesterday. I'll let you know.

Have a wonderful weekend!

Mum
Title: Re: Mini update
Post by: Ann on April 24, 2009, 07:16:48 am: Burn, baby, BURN!

Keep the good news coming! Fantastic stuff.

Hugs to the family,
Ann
xxx
Title: Re: Mini update
Post by: Robert on April 24, 2009, 11:36:02 am: miniandfamily.

have a great time at the ball game. It's been a long spring but now it's time to 'play ball.'

robert
Title: Re: Mini update
Post by: minismom on April 24, 2009, 03:28:04 pm: Long spring?? We're barely out of winter. We had freezing temps and snow the beginning of the week. Opening day usually finds the town in sweats and coats dodging rain and /or sleet. It'll be nice to sit out in the warm sun enjoying a full day of BBQs and ball games. Gatorade instead of hot chocolate.

Ann, you have no idea how happy we are. Mim's EEG has been rescheduled for 5/18. We'll have all of her tests and results in before we see Dr. F on the 20th. Then after that, I don't want to THINK of another doctor until after Boston. (speaking of which, have you all ordered your HOPE bracelets yet?)

And, I made yet another mistake. She only takes 1/2 of an Epzicom for 3 days, not 1/2 in the am and 1/2 in the pm. Only 3 more days of Prednisone, then I should be coherant once again. We're going to do 1/2 pill for 4 days so we don't have 1/2 a pill floating around. I like things even - that's why we don't have 7 kids (but we could have 8 ;D)

Have a wonderful weekend! If I can figure out how, I'll post pictures of Mim's first ball game.

Much love to you all!
Mum
Title: Re: Mini update
Post by: Longislander on April 24, 2009, 05:09:47 pm: I can't think of a better way to kick off this beautiful spring weekend ( finally! ) than to read all this good news!

Have a great time at all the games, mum, but be easy on your lungs with all the screaming!

Paul
Title: Re: Mini update
Post by: minismom on April 26, 2009, 06:49:59 am: We made it (whew!). It was a crazy, hot day and I personally am glad it's over. The opening ceremonies were really cool. There were about 200 kids on the various teams (ages 3 - 13) and they were very much center stage. Our kids make up parts of teams on all 3 levels (t-ball, coaches pitch, and minor league). They had games at 11:30, 1:15, and 5pm. We left the house at 8:30am and got home at 8pm. Kids were in bed by 9, I was asleep on the couch by 9:15.

T-ball doesn't keep score, so of course our team won ;). Mim and #2's team won their game 11 to 2! Both my kids struck out, though. By that time, Mim was hot, tired, and said she just wanted to go home. But, she didn't quit - that's what's important. Our oldest son's team lost 4 to 6. But, that's OK, too. They played a good game.

Tomorrow Mim will find herself in the dentist chair having 2 cavities taken care of. She's excited about having shots in her mouth, but upset that she won't get a bandaide. What's the deal with kids and bandaides? I'm just glad she won't have to be pre-dosed.

So far so good with her Epzicom. This is day 3 of her 1/2 pill. I'm not sure what side-effects to watch for but she has no rashes, her appetite is good and her sleep patterns haven't changed. Let's just keep praying it stays that way.

Hope everyone is having a wonderful weekend.

Mum

edited to add: Paul, Hubby thinks Dr. F is married. I think he's single, doesn't wear a ring, but I think he mentioned a daughter. He wears purple and drives a purple car - my favorite color. And, he's a Star Trek fan - just like my Hubby. Not sure how old he is, but I'd say upper 40's to early 50's. It may be worth a trip to Ohio ;0)
Title: Re: Mini update
Post by: Ann on April 26, 2009, 08:11:50 am: Hey Mum, you can tell Mini that the only dental band-aids they make are designed to go across the lips. :-X ;D See if she still wants one then! ;) (tell her I'm only teasing!) Excited about shots in the MOUTH?!?! Um, ok, sure thing! ::) :D

I'm so happy to hear that it's so far, so good with the Epzicon. Fingers crossed! :)

Hugs,
Ann
Title: Re: Mini update
Post by: Longislander on April 27, 2009, 12:04:08 am: Quote
edited to add: Paul, Hubby thinks Dr. F is married. I think he's single, doesn't wear a ring, but I think he mentioned a daughter. He wears purple and drives a purple car - my favorite color. And, he's a Star Trek fan - just like my Hubby. Not sure how old he is, but I'd say upper 40's to early 50's. It may be worth a trip to Ohio ;0)

LOL, maybe the daughter is from his wayward youth!?? But is he handsome? I've got a car......
Title: Re: Mini update
Post by: minismom on April 29, 2009, 08:35:58 am: Mim did really good with the dentist. She's now decided that she definately does NOT like shots in the mouth. The dentist gelled her gums at 9:10 and by 9:30 we were on our way home. I expected some down time and a dose of Tylenol as feeling came back. But, she was inside 2 minutes before she ran outside to play. She goes back tomorrow to fill a cavity on her upper left side, then Tuesday to fill one on her lower left side. The dentist won't numb more than 1 quadrant at a time in kids. He says it keeps them from biting their lips and tongue. (not to mention padding the bill).

Dr. F called yesterday to see how Mim was doing on her Epzicom. I think he's just sucking up so I'll make him some more truffles. ;) She's doing perfectly. Today is her second day on a full pill and she's having no sdie-effects at all.

Next week will see us in dress rehersals M - Th for our concert Friday night. Getting close and exciting for all of us.

We're off for an exciting day of grocery and shoe shopping. Oh, joy! ::)

Have a good one!
Mum
Title: Re: Mini update
Post by: Ann on April 29, 2009, 08:39:58 am: Mum, it's such a relief that Mini is tolerating the Epzicom well. It's about time that kid had a break! YAY!

Hugs to the whole family,
Ann
Title: Re: Mini update
Post by: Inchlingblue on April 29, 2009, 11:51:33 am: Woo hoo for Mini@!

I know everyone is different and there are definitely differences between kids and adults when it comes to medications but for whatever it's worth, I have a friend taking Epzicom (along with Reyataz/Norvir) and he's doing great. He started with a high viral load (800k) and Tcells around 250 about 6 months ago and he's now almost undetectable and Tcells are about 750, and no side effects.

Epzicom ain't bad at all.
Title: Re: Mini update
Post by: Longislander on April 29, 2009, 10:36:48 pm: Great to hear she's tolerating the meds/dentist trips well!
Title: Re: Mini update
Post by: minismom on May 01, 2009, 06:48:24 am: We went ahead yesterday and had the fillings done on the left and right front. The dentist was OK with it because it wasn't top and bottom. He said there was less of a chance Mim would bite her cheek or tongue if the top of her mouth was numb. I was just happy we didn't have to go back on Tuesday. She didn't moan as much about the shots. When I told her I was proud of her for not yelling, she said, "It didn't do me any good last time. It wouldn't have done me any good this time." Well, she's right.

Her ball team won their game last night. They're 3 - 0. They came back from a score of 5 to 0 in the 4th inning to win it 6 to 7 in the 6th inning. The coach and I are going to have a discussion, however. There are 4 kids (2 of them mine) who sit out every other inning. The other kids (including his son and nephew) get to play every inning and bat every round. These 4 kids generally get to hit once the entire game. My little man hit twice on Tuesday and scored 2 points. Mim hit last night, got to 1st base, then the coach's son who can do no wrong hit the ball to the 2nd baseman. Mim got out then sat the next batting round. I think every kid should have a turn on the bench and a turn to miss a bat.

Just an FYI: our ex-Doc has yet to contact us. She has no idea that Mim is seeing a new PID. I have a letter ready to send to the cheif of staff, chief of peds medicine, and to her. I was hoping to wait until we were contacted to make up the appointment she canceled back in March. Looks like I'll just have to send it. Debate is still going as to wether we should wait until Mim sees the eye doctor in May. He happens to be ex-Doc's husband.

I'll let you know what hapens.

Mum
Title: Re: Mini update
Post by: mjmel on May 01, 2009, 04:08:02 pm: Quote from: minismom on April 26, 2009, 06:49:59 am

edited to add: Paul, Hubby thinks Dr. F is married. I think he's single, doesn't wear a ring, but I think he mentioned a daughter. He wears purple and drives a purple car - my favorite color. And, he's a Star Trek fan - just like my Hubby. Not sure how old he is, but I'd say upper 40's to early 50's. It may be worth a trip to Ohio ;0)

Somehow I missed this part (quoted above).

Hubby is correct. Has a partner.

Mike
Title: Re: Mini update
Post by: minismom on May 03, 2009, 06:49:00 am: I figured he was taken. A man like that doesn't stay single for long ;). But, Mike, you must solve the debate: does he have a daughter? I don't remember him mentioning one, but Hubby swears he did. You are the tie-breaker.

Just a bit of intresting info: We have had more written and verbal communication (outside of appointments) with Dr. F and / or his nurse (usually both) than we have had with the ex-PID in
8 1/2 years.

Mum
Title: Re: Mini update
Post by: minismom on May 11, 2009, 07:20:41 am: We made it through last week, although barely. We left our house around 4:15p for dress rehersal and arrived home between 10 and 11 M-Th. The concert was Friday and everything came together beautifully. It was hectic - tons of costume changes - but we figured it out.

Mim did very well through it all. She struggled with a couple of dances, but came through smiling regardless. By the last dance, she was exhausted. Her whole body looked drained. By Saturday morning, she was ready to do it all again. Fortunately, we didn't have to. My body is still trying to recover.

Mim's legs are starting to turn again. Her gait and balance have been getting worse, little by little, over time. She has her EEG and sees her neurologist next week. I'm afraid we'll be discussing putting her back in leg braces. It's not something any of us want, especially her, but knew it would happen eventually. Well, "eventually" is here. No doubt she'll get through it - she always does.

Thursday she sees her eye specialist (ex-Doc's hubby - should be intresting). We're still trying to peice together what's causing her tracking problems. We should have an answer by the end of this month. Fingers crossed.

I hope all of you had a wonderful weekend. Will let you know how things go.

Much love,
Mum
Title: Re: Mini update
Post by: minismom on May 12, 2009, 01:30:58 pm: Just a real quick update / change of plans. Mim will NOT be going to the eye specialist on Thurs. There are 2 very good reasons for it. First, he's her ex-PID's husband. Second, he's seen her every 3 - 6 mths since she was 8mths old and has never tested her for tracking issues, let alone diagnosed her with them. If you remember, it was her ENT that noticed the problem.

Instead, on June 4th we will take her to see a nationally reknown Occupational Opthomologist named Dr. Veronneau. He's done excellent work in the field using prism glasses and computer based vision therapy. I'm very excited about being able to get her in. We'll see what happens.

Next week she has her EEG and sees neuro. on Monday, ENT on Tues., and Dr. F on Wednesday. Then the 25th we are off on a week-long family vacation to Hershey, PA. 13 days and counting....

Mum
Title: Re: Mini update
Post by: Inchlingblue on May 12, 2009, 01:46:43 pm: Quote from: minismom on May 12, 2009, 01:30:58 pm
Just a real quick update / change of plans. Mim will NOT be going to the eye specialist on Thurs. There are 2 very good reasons for it. First, he's her ex-PID's husband. Second, he's seen her every 3 - 6 mths since she was 8mths old and has never tested her for tracking issues, let alone diagnosed her with them. If you remember, it was her ENT that noticed the problem.

When you had said he is her ex-PID's husband I didn't think it was a good idea to keep seeing him but it wasn't my place to say anything. Add to that the fact that he's been seeing her for so long and done a mediocre job at best and that equals: time for a change!@

I'm very happy for you guys.......and have a great time in Hershey ;)
Title: Re: Mini update
Post by: Longislander on May 12, 2009, 08:35:27 pm: Hi Mum,

Very happy to hear that you were able to get her in with another great Dr!! Lots of appts, I hope all goes well.

Good you have that vacation to look forward to during all of this-I'm sure you'll all love it!

Paul
Title: Re: Mini update
Post by: Robert on May 12, 2009, 09:29:46 pm: hi mim and mom

good to hear you're going to see a different eye doctor. ARe you going to follow through on your complaint about your ex PID? If you do, you can add a PS and include a note about her incompetant husband. Just don't let that stress you out and sap all your energy. You have a good Dr. now. Focus on that.

Ummmmm.. Hershey? Can you say chocolate? I can !!!. I know there's more to the place than just chocolate but why don't you just drop me off at the chocolate factory? You can pick me up on your way out of town. ;D

robert
Title: Re: Mini update
Post by: minismom on May 13, 2009, 09:40:16 pm: Hun, I don't care what else there is in Hershey - just point me to the chocolate and Mum's a happy camper. I'm looking forward to spending some time with Hubby and the kids away from the chaos we've been engulfed in lately.

Robert, yes, I'm still in the process of writing the letter. I'm including specific incidences with dates. I've kept notebooks of appointments and phone conversations since Mim was born. It's hard keeping emotion out of it. I'm just so happy that we've found a new (wonderful) team.

I asked Mim today if the words on the page were blurry. She said no, they just "dance" around and after a little while the letters grow shadows. She said that's why she gets so confused and lost. I'm thinking that could possibly cause her headaches also. I've been reading the book "When Your Child Struggles" and it describes Mim to a "T". I can't wait to see what Dr. V says.

Thank you all for your continued support. It really does mean the world to us.

Mum
Title: Re: Mini update
Post by: Ann on May 14, 2009, 04:04:00 am: Mum, I'm so happy to hear that you're pursuing a complaint against this poor excuse for a doctor. And remember, it's not about vengeance, it's about saving some other kid(s) from her incompetence. Somebody's got to stop her!

Have fun in Hershey!

Ann
Title: Re: Mini update
Post by: AndyArrow on May 15, 2009, 05:10:55 am: Ditto to everything Ann just said ... especially the part about having fun in Hershey!!!
Title: Re: Mini update
Post by: minismom on May 17, 2009, 06:38:03 am: Yesterday was a mixed-bag. Our oldest son had a ball game that his team lost 11 to 14. The 2hr game ended up lasting 3 hours due to a rain delay in the 3rd inning. He pitched the 2nd half of the game, walking no one and striking out 3 people. ;D The last inning he was walked to 1st, then stole 2nd, 3rd, and home (in one play). Very exciting indeedy.

Mim and our 2nd son had a game just after. 1st inning, a ball bounced out of her glove and smacked her in the chin. There were tears, a diet Coke, and a free popcycle. All was well. Their team won 12 to 2.

In the middle of the game, she came over to sit in my lap. She looked at me very seriously and told me that everyone thinks she's not paying attention or trying hard when she misses a ball or can't hit it right. But it's not true. When the ball is coming at her, it turns into 4 balls. How is she supposed to know which one to catch? Then she asked me what I do to make the 4 balls one ball again. I wanted to cry. I simply told her that I only see 1 ball. But, that's the kind of thing she needs to be sure to tell Dr. V when we see him. He'll be the one who can help her. Satisfied, she jumped down and rejoined her team in the dugout.

1 ball "turning" into 4. Words that "dance" around and have shadows. I think we're finally getting somewhere.

Tomorrow morning, she has an EEG done at 10am, then we see her neurologist at 12:30 for the results. We'll no sooner get home then run back out for ball games. The whole gang will be playing at the same time.

Hershey...8 days and counting!

Have a wonderful Sunday!
Mum
Title: Re: Mini update
Post by: Longislander on May 17, 2009, 06:37:26 pm: Hey mum,
Congrats on all the fun, good stuff in that last post! I just wanted you to know it damn near broke my heart when you wrote about the 4 balls. I pray they get this figured out quick!

I wonder if they have something like chocolate baths at Hershey?? ;D
Title: Re: Mini update
Post by: minismom on May 21, 2009, 02:50:56 pm: Our marathon week of appointments is finally over.

Monday's EEG came back "normal". A relief, but not a suprise. The more I research her vision problems, the more I'm believing it is the root cause of her headache / dizzy / falling / "shutting down" issues. As a matter of a fact, on the way out of the office, Mim nearly ran into the wall. She laughed and said, "Whoops, there goes that double vision thing again. I thought the door was right there." She scootched over a couple of feet and walked out the door.

Tuesday's ENT appointment was also non-eventful. The swollen lymph node on the left of her neck has shrunk considerably. Mim explained to Dr. D what things look like to her and I could see the lightbulb go off. He looked at me and we just smiled at each other. He agrees with me. About time SOMEBODY did!

Wednesday we took a beautiful 314 mile drive to Chillicothe to see Dr. F. It's the 1st time we've seen him when it wasn't raining and cold. He agreed that while the swelling had gone down on the left lymph node, there were now several smaller knots that will need to be watched. Also, one under her left armpit is now swollen. And, she's somehow managed to lose 2lbs. Not too alarming considering she was in winter clothes the last 2 weigh checks and only in a cotton t-shirt and shorts for this one. She's also been dancing and playing ball over the last month. Still, we need to make sure she puts the weight back on. Otherwise, Dr. F will have to change the strength of her Epzicom which may not be strong enough to keep her virus at bay. We had blood work yesterday and we should have the results in a couple of days. We go back in 8wks for another check-up.

Something else happened that made Hubby and I both laugh. Dr. F. got about half of Mim's old records from her previous doctor. He said that as he read through them, he found some very contradictory advice / findings going on. He also found some things that plain didn't make sense. YOU THINK?? Suddenly I'm not so stupid.

2 ballgames tonight, 1 more tomorrow night, then I can concentrate on packing for Hershey. We've called ahead and asked that extra shifts be scheduled to accomodate my fevered chocolate addiction ;D

Have a great Thursday!
Mum
Title: Re: Mini update
Post by: minismom on May 23, 2009, 07:28:56 am: Dr. F's office called yesterday with some of her lab numbers.

CD 4: 1205 (down a bit, but hardly complaining)

CD4%: 50.2% (never been this high before)

Red blood count: 3.49 (a bit low)

Total Cholesterol: 172

LDL: 62 HDL: 34 Ratio: 1.8

Triglycerides: 378 (HOLY CRAP!!!)

Overall, I'd say the Epzicom is doing the job quite nicely. This is the lowest her LDL has ever been and the highest her Tris have ever been. She still needs to gain 3lbs and has to do it while maintaining a low LDL, not raising her cholesterol, and lowering her tris. Besides eating hay, anyone have any suggestions?

Hershey: 2 days and counting down!

Mum
Title: Re: Mini update
Post by: newt on May 23, 2009, 10:41:59 am: Re: weight, get a bit older ;-)

Her CD4 count will drop off as she gets old, kids have mor od the damn things, so no worries

This is a good set of results.

- matt
Title: Re: Mini update
Post by: Inchlingblue on May 23, 2009, 12:54:45 pm: Quote from: minismom on May 23, 2009, 07:28:56 am
She still needs to gain 3lbs and has to do it while maintaining a low LDL, not raising her cholesterol, and lowering her tris. Besides eating hay, anyone have any suggestions?

Omega oils, mainly found in fish, especially tuna, mackerel, salmon, sardines. Of course you don't want to overdo it on the fish (assuming she even likes it, there are concerns over too much mercury) so there are capsules. These are also good for supporting healthy brain function. Costco has several good quality ones to choose from and decent prices, considering the quantities.

Flaxseeds also are good as is fiber. I like to make smoothies in which I add ground flaxseed and psyllium husk. Costco also has good quality and well-priced flaxseed oil caps. You could also sprinkle actual flaxseeds on cereal.

Exercise of course is also key but it sounds like Mim is an active little girl.

The American Heart Association has information specifically geared for children:

http://www.americanheart.org/presenter.jhtml?identifier=1477
Title: Re: Mini update
Post by: minismom on May 24, 2009, 06:16:20 am: Newt, that's exactly what my mum said about her weight. Just wait until she's in her mid-20's and she'll gain 5 pounds just smelling chocolate or driving by McDonald's. I haven't noticed her eating any less than normal. She tends to eat enormous amounts of food, but no snacks between meals or before bed. There's the odd bit of popcorn (steam popped, no butter or salt) when we're watching a movie at home.

I'm thrilled with her results. They've rebounded nicely after her downward trend. I just wish her stinkin' tris would go down.

Now, a different issue has come up. When we were at the mall yesterday getting the last few things for our trip, Mim asked if we could sit down - her legs were getting tired. No sooner did we sit then she jumped back up and started doing this wierd stretchy looking thing. I asked what was wrong and she said that sometimes her bones feel like they are going to break. But, if she stops and stretches some, then they feel better for a few minutes and she can move. She said he happens in her hips, knees, elbows, and her spine. One minute they feel like they can move, then the next minute they won't. She said it happens when she lays down, too. Huh. I've shot an email off to Dr. F explaining what's going on. We'll take the phone number of the ortho doc with us and call on the way to Hershey tomorrow. If need be, we'll call Dr. F's office and have him make the referral. This is going to be a long summer.

Take care of yourselves and each other. See you in a week!

Hershey: pulling out at 9am tomorrow morning 8)

Mum
Title: Re: Mini update
Post by: Robert on May 24, 2009, 10:57:59 am: mum

it has always impressed how aware mini is of her body. she is one sharp cookie.

have a great time in hershey. don't get lost in the chocolate factory.

robt
Title: Re: Mini update
Post by: minismom on May 29, 2009, 06:21:56 pm: We made it home this afternoon just before 3pm. In short, the weather was frigid, the mattresses were rock hard, but the company (hubby and the kids) was amazing, the chocolate divine, and the memories unforgetable. We even made s'mores in the rain. ;D

We have a few appointments this week before heading for the beach next Sunday (June 7th). Eventually, I'll get a web-album together and email the password so you all can take a peek.

Thank you for the well-wishes, PM's, and encouraging words.

Mum

edited because I forgot my name.
Title: Re: Mini update
Post by: Longislander on May 29, 2009, 07:10:51 pm: Hey, welcome back, and who's ________??

The weather's been pretty crappy up here lately, but glad you guys were able to have a good time just the same~

Paul

Edited, because Mum remembered her name ;)
Title: Re: Mini update
Post by: minismom on May 30, 2009, 07:57:23 am: I've got my head and my thoughts and head together a bit more this morning. As is her style, Mim dragged Hubby and me on every roller coaster they'd let her on. She was hooping and hollering with arms in the air. I was ducking with my eyes closed trying not to puke. She was a bit disappointed they wouldn't let her on Farenheight - you ascend completely vertical (flat back, starring at the sky) and descend at a 97-degree angel. People getting off said they tried to scream on the way down, but couldn't until they reached the bottom.

We weren't there long before Mim asked if we could talk to the doctor about giving her a wheel chair. Her hips, knees, and spine ached something terrible. She said that she WANTS to see things and go places, but sometimes it would be nice to be able to sit down while she did. Broke my heart. But, I promised that she could talk to the doctor about it when we see him the end of the month.

Our youngest son, 6, got to ride his 1st (and 2nd and 3rd and 4th) roller coasters. He's an official junkie, now. Our youngest daughter learned two new phrases: "kiddie ride" (tiddy bibe) and "more chocolate" (mo gokalit). My parents informed me that during our trip to the beach next week, we'll be heading over to Busch Gardens. Now Mim can drag my brother on the roller coasters - he's a junky, too. ;D

Back to normal life today filling the pantry and doing the laundry. Still cold and rainy. I'm still convinced that one day the rain will stop and the sun still exists somewhere.

Have a great rest of the weekend!
Mum
Title: Re: Mini update
Post by: newt on May 30, 2009, 06:37:50 pm: Apart from the wheelchair), Why Would One Do TheseThings?

Glad mini is having fun, but give me a beach at sea level (not moving, not vertical) and a sunset any day

- matt
Title: Re: Mini update
Post by: BT65 on May 30, 2009, 09:21:13 pm: Well mum, if Mim insists on a wheelchair, tell her to make it a Hoverround so she can move without anyone pushing her (go at her own pace). ;) She'll have more fun that way.
Title: Re: Mini update
Post by: minismom on May 31, 2009, 06:27:09 am: Betty, that's funny. I told Hubby that we'd get her a Hoverround with a trailor hitch on it. That way, I could hook up a wheeled sofa and she could drag the rest of around. ;)

Newt, the beach does nothing for me. I hate sand. I hate wet sand even more. The waves make me seasick - even watching them. Seagulls over head make me nervous - eventually they'll have to poop. Before being allowed back into the condo, the kids have to drench in the outdoor shower, jump into the pool, strip just inside the door, then straight into the bathtub. I don't want sand in the carpet, the furniture, the beds, or the showers. And, yes, bathing suits and towels get washed everyday. I'll stick with my wooded moutains and wildlife.

Mim is a massive adrenaline junky. If she thinks there's even a remote possibility of maming or death, she's going on it. The more warnings, the better. My old vestibular system just can't take it anymore. Can't even read in the car without popping a Dramamine.

Hope all of you are having a great weekend. Here, it's almost over. :'(

Mum
Title: Re: Mini update
Post by: minismom on June 04, 2009, 07:03:19 am: In a couple of hours, we will be traversing the mountainous backroads on our 140 mile (one way) trip to see an Occupational Opthamologist about Mim's double vision. 2 of our other children will also have exams done. The other 3 will be whisked off by their grandmother and great-grandmother to the wonderful world of Wal-mart.

Tomorrow is my anniversary and I'm not proud to say that I completely forgot. Hubby reminded me, which I will never live down. I've had so much on my plate these last 6mths - really no excuse, not even a good reason. I simply forgot.

Sunday morning we leave for the beach. I've done the food shopping, gotten meds refilled, and made the packing list. I just need to find the time to finish the housework and get it all together. As if I wasn't busy enough, our oldest son plays an away baseball game - an hour away - Saturday afternoon, forcing me to reschedule our middle daughter's birthday party to 7pm. Yes, I know, the night before we're leaving. It's going to be a very long weekend.

We've not gotten any more of Mim's numbers back, although I'm not expecting any suprises. I"ll be sure to pop in tonight and let you know what happened with the new eye doctor. I really believe that this will provide the answer for many of our questions.

Take care!
Mum
Title: Re: Mini update
Post by: AndyArrow on June 04, 2009, 01:23:38 pm: I'm glad the whole family had a nice trip & Happy Anniversary!

Hugs,
AA

PS I love rollercoasters!
Title: Re: Mini update
Post by: minismom on June 05, 2009, 06:25:46 am: I am hurt. I am disappointed. I am frustrated. I am angry. I am sad.

First, I will give credit where credit it due. Our son's appiontment, he went first, was wonderful. The doctor was very kind and patient with him. He listened to what I had to say, took tons of notes, worked with our son through the a very lengthy and comprehensive exam. He changed his prescription -doubling it - and gave us some strategies for helping him. Our daughter went last. Again, he was wondeful with her. Kind, patient, very thorough. With odd-shaped prism lenses, he was able to correct her periphreal vision loss - something her other eye doctor had never done. She's got a whole new field of vision. For those things, I am greatful.

In between them, was Mim. With her, he blew it. He kept his back to me when I was trying to explain her reading issues, her eye fatigue, her double vision. I was using her words to explain things. He never even aknowledged that I was speaking to him. During her very quick, uncomprehensive exam, he was harsh, spoke unkindly to her, and was very impatient. She was having trouble understanding what he wanted her to do. She was having trouble reading the eye chart - DUH! The more trouble she had, the worse he got with her. In the middle of the exam, he finally looked at me and said that Mim was doing it for the DRAMA! He accused her of faking it saying that she's going to do what she wants to do. WHAT?!? I was shocked! All this child has ever wanted was to be like everyone else. And, newsflash: YOU CAN'T FAKE A VNG!

I just kept hoping that something would happen to make him understand. Instead, it got worse. He blew her off. He said that he saw no physiological reason for her to have double vision and saw no evidence of it during the exam. He asked our son, who has no double vision, to look at a card and tell him when he saw 2 objects as he moved the card forward and then when he saw one object as he moved the card back. HE NEVER EVEN GAVE MIM THAT TEST! He saw no physiological reason? He's a NEURO-OCCULAR specialist there aren't always physiological evidence (ie: damage to the eye nerves, a growth on the eye) for neurological issues. More times than not you have to go by the physical manifestations (ie: double vision and tracking problems) of the neurological issue. I know that much and I'm not a doctor!

There are computer programs that he sells for at-home vision therapy. He never offered them to us for Mim. Even though the research I've done, including the book for which he consulted, says that vision therapy has had wondeful success in people with double vision and tracking issues. I've emailed Dr. F for a prescription for vision therapy. We won't have the conveniance of doing it at home, but at least she'll be getting help.

So, where do we go from here? I'm not really sure. I'll do more research and see what I can find that may help her. I signed consents for him to get their records from previous doctors. I'm faxing him today revoking my consent. I'll also fax thier previous eye doctors and let them know about the revocation. Right now I am at a loss, but all is not lost.

Mum
Va beach: pulling out 9am Sunday morning.
Title: Re: Mini update
Post by: minismom on June 05, 2009, 02:20:03 pm: Just wanted to give you all a very quick update, then I'm back to house cleaning and packing.

I found a couple of sites that we can use until things can be sorted out. One has worksheets that we can print and Mim can work on to help her improve her visual perception, tracking, and visual memory. I also found a free site that has some occular exercises she can do to help with the same. I did find visual therapy at-home software but at $780, it's way above our means. But that's OK.

I emailed her ID doc, Dr. F and let him know what happened. I also asked him if he'd write a prescription for vision therapy. I have no doubt that it will be waiting in my mailbox when we return. I also found another Developmental Ophthamologist in Pitts. I've contacted our insurance company to see if they will pay for us to see him as a second opinion. I gave them all the information, faxed some stuff to them, and someone will contact me. If they won't, we'll still take her and just pay for it.

I've contacted the hospital where the "other" eye doctor practices and revoked my consent. I have a fax ready to be sent to Dr. V's office explaining that my consent for them to get the kids' records has been revoked. I'm drafting an email to send directly to Dr. V explaining my utter disappointment. A copy of it, along with a formal complaint is being sent to our state board.

Somehow managed to get it all done, along with a load of laundry, all the clothes packed, and half the house cleaned before lunch. Not too bad.

Have a great Friday!
Mum
Title: Re: Mini update
Post by: Inchlingblue on June 05, 2009, 02:34:42 pm: After reading that update, which was so impressive in every way, so utterly on the ball, it reminded me of the orgasm scene in When Harry Met Sally.

"I'll have what she's having." ;)
Title: Re: Mini update
Post by: minismom on June 05, 2009, 02:49:46 pm: Honey, you can have all of our old, piece of crap, god-complexed, prejudice doctors. PM your address and I'll have them all shipped priority mail :P

I also find that lack of sleep, chocolate milk, Reese's cups, a few good cries, a Hubby who totally understands why I forgot our anniversary (for the second time this week), and a friend named Jenny help smooth out the rough spots.

Mum (who needs no better motivation than her children - I'll throw those in for free, but you have to give them back)
Title: Re: Mini update
Post by: Robert on June 05, 2009, 05:58:00 pm: mum...

I'm sorry to hear this. Why do you suppose he refused to work with Mim? Do you think it was the virus? Her ethnicity? It's baffling. I'm glad you're telling him to take a hike. But you shouldn't have to. I mean, my gawd, what you went through before with the other eye Dr and the PID Dr. you'd think you'd get a break.

I really, really hope you get some rest at the beach. I just can't imagine it, though, with 6 kids and sand.

robt
Title: Re: Mini update
Post by: minismom on June 06, 2009, 07:22:57 am: Robert, I just don't know why and don't want to speculate. The why doesn't really matter so much as the action itself. He will wake up this morning to an email from me. While he may not care that he's just lost 6 patients, I figure the warning that this, and all other coorespondence, will be copied and sent along with my formal complaint to our state board will get his attention sufficiently enough.

The only thing Mim has mentioned is that it's not fair I and S get the glasses they picked out and she doesn't and they were a really nice pair. I told her not to worry that I'm sure she'll find a pair she likes even more. Such a simple thing and yet, not so simple at all.

I know she gets tired of being dragged from state to state, doctor to doctor, looking for answers that we may or may not find. Seems she doesn't get much of a chance to just be. It wears on her. It wears on all of us. We make room for confessions of being tired, worn out, and frustrated. But we keep going, hand in hand, because we understand the alternative. And that's not an option.

Mum
Title: Re: Mini update
Post by: minismom on June 13, 2009, 09:48:40 pm: We have ended another successful family venture. Somehow I even managed to survive the sand - the ocean touching no higher than my ankles as I was rinsing off sand toys and skim boards. The weather was hotter than I like, but a nice breeze helped break up the worst of it. The pools were heavenly, Busche Gardens a hoot, and great crack was had by all. Still, I'm glad to be back in my own bed, surrounded by the scent of pine, lulled to sleep by the crickets and frogs, watching the sun set behind the mountains from my front porch. It's good to be home.

Before leaving, I faxed a letter to the notorious eye doctor. We had our mail held and won't know if he sent us a reply until Monday. I was happy with the overall tone of it. Hubby thought it was way too subdued (especially coming from me :P). It stated the facts, contained quotation marks, and was devoid of overtly hostile emotions. I was quite proud of myself.

With barely time to breathe, Monday and Tuesday finds us at various doctor's appointments. Monday I'm off to see a specialist about my persistant lung issues. You read that right, ladies and gentlemen, I am going to see a doctor. :o Shocking, I know. Tuesday, our youngest has another hearing test with a new audiologist - same one who did Mim's VNG testing. Here's hoping Peanut gets her much needed, and long over-due, hearing aide(s).

Before I forget, I owe a Basquo a great big thank you! Because of his very helpful (and cheapskate) advice in MC, I have the beginnings of some very lovely gift baskets. The deal made even sweeter when I found the hotel leaves Bath and Body shampoo, conditioner, and lotion in the bathrooms. You know I am ALL about the BnB. To make it more tempting, Hubby found where housekeeping supplies were stashed - and our room key opened the door!

I hope you all had a wonderful week. Here's to better times ahead.

Mum
Title: Re: Mini update
Post by: minismom on June 13, 2009, 10:07:26 pm: I thought of something after I hit "post" and didn't feel like editing.

When we arrived at Busche Gardens, Mim was armed with my dad in one hand and my brother in the other hand, plotting out which coaster to go on first. She pointed out a few that, thank goodness, she was too short to ride. However, I found one that looked "tame" and even convinced our novice junkie 6yr old son to ride on.

There was no line and 90% of the ride was obscured by trees. He was a bit nervous, but being the loving mum I am, I convinced him that they wouldn't have let him on the ride if it was dangerous or scarey. "But will it go upside down?" "Of course not, hun. I'm positive they wouldn't let little guys on roller coasters that go upside down." "Will it go down really fast?" "It'll go down, but not far and not too fast. Those big drops they save for big people."

I proudly sat my sweet boy next to my Hubby and pulled down the chest harness. A peck on the cheek, and I took my position in front of them, next to Mim. Glancing back, I could see his face and talk to him. Up, up, up we went, bracing for the inevidable "down". Instead, we went straight and flat. I turned to reinsure my boy that mum was right. No sooner did I turn to gloat, then Mim grabbed my leg, my boy's eyes got wide, and Hubby yelled for me to turn around and brace myself. Holy rice and fried greens! We dropped a whopping 150 feet nearly straight down towards a lake. My stomach was instantly in my throat. Couple of side-ways crazy turns, and things looked to be slowing down.

I took the "lull" as a time to apologize to my boy who had lost his tan and was frozen in a kind of twisted, open-mouthed, silent scream. I was telling him the worst was over and it would all be over soon, when the world suddenly turned upside down. Literally, upside down. So much for my gloating. At that point, I was praying for survival.

More hair-pin turns, a dark cave with sudden drops, another upside down loop, then all was suddenly still. Took awhile for my rattled brain to register that "still" meant "safe" which means "get out". My boy just looked at me with a mix of shock, horror, and disbelief. Took him half an hour to recover. Took most of the day before he believed my description of another ride.
Title: Re: Mini update
Post by: minismom on June 17, 2009, 08:43:24 am: Bought dark, whole flax seeds yesterday for Mim. I ground some up and gave her a spoonful. She gagged and sputtered, but eventually swallowed it. Our youngest son loved it and ate 4 spoonfuls.

Yesterday got her some Isopure (thanks, Philly) protein shake mix -orange, pineapple, banana flavored. I mixed it with milk, orange juice, and a banana. She hates it. I tried bribing her with sugar cereal, but it's not working. She can be stubborn when she wants to be. Now she has to go potty - AFTER she finishes her smoothie. I know, I'm mean, but she needs to drink it.

Hips and knees are giving her fits again. Rubbed them with lavender and wrapped them in warm towels. Seems to help for a bit, but not a perminant fix. She's scheduled to see an ortho doc and rheumatologist the middle of August.

So far, we're enjoying a peaceful week. Nice to have time to breathe. Don't expect it'll last long.

Mum
Title: Re: Mini update
Post by: Inchlingblue on June 17, 2009, 12:12:47 pm: Quote from: minismom on June 17, 2009, 08:43:24 am
Bought dark, whole flax seeds yesterday for Mim. I ground some up and gave her a spoonful. She gagged and sputtered, but eventually swallowed it. Our youngest son loved it and ate 4 spoonfuls.

I find it's best to "hide" it, like sprinkling it on cereal or in a smoothie (if you can find a smoothie she likes to begin with) or put a little into pasta sauce, etc. You can also get it already ground, you probably know that already. It should be ground in order to get the full benefits. And lastly, you can also get flax seed oil caps, which are also very good.
Title: Re: Mini update
Post by: AndyArrow on June 18, 2009, 03:07:07 am: Quote from: minismom on June 17, 2009, 08:43:24 am
Yesterday got her some Isopure (thanks, Philly) protein shake mix -orange, pineapple, banana flavored. I mixed it with milk, orange juice, and a banana. She hates it. I tried bribing her with sugar cereal, but it's not working. She can be stubborn when she wants to be. Now she has to go potty - AFTER she finishes her smoothie. I know, I'm mean, but she needs to drink it.

I know where she is coming from back when I had to try to regain all the weight I had lost I tried so many different protein drinks ... hated all of them.

Carnation instant breakfast drinks ** if mixed with milk** has 13 grams of protein ** 5 grams without** so not exactly HIGH in protein but every little bit helps ... and I liked it. ;)
Title: Re: Mini update
Post by: minismom on June 19, 2009, 12:20:36 pm: Problem with Carnation is that it's also loaded with sugar which will raise her tris. We're now trying a different approach. I bought a quart of vanilla icecream made with Splenda. She's getting her protein powder as a shake. I also added a couple of fresh strawberries and promised that once she's finished this container, we'll talk to Dr. F about trying something else. For now, she's satisfied. Besides, what other kid do you know who gets "forced" milk shakes for breakfast?

As for me, I have a pulmonary function test Monday afternoon. I finally found a doc who agrees that breathing is necessary. Gee, to think it only took 1yr and 8mths to find her.

On another cool note, our youngest (5 1/2) peed in the potty for the 1st time on Wed. She hasn't done it since, but if it can be done once, it can be done twice. At least, that's what I'm hoping.

Hope everyone is having a wonderful Friday with great plans for the weekend. And, before I forget, HAPPY FATHER'S DAY!

Mum
Title: Re: Mini update
Post by: Inchlingblue on June 19, 2009, 01:18:59 pm: Quote from: minismom on June 19, 2009, 12:20:36 pm
Problem with Carnation is that it's also loaded with sugar which will raise her tris. We're now trying a different approach. I bought a quart of vanilla icecream made with Splenda. She's getting her protein powder as a shake. I also added a couple of fresh strawberries and promised that once she's finished this container, we'll talk to Dr. F about trying something else. For now, she's satisfied. Besides, what other kid do you know who gets "forced" milk shakes for breakfast?

Throw in a tablespoon of ground flaxseeds, she won't notice!
Title: Re: Mini update
Post by: minismom on July 08, 2009, 07:53:27 am: Wow! It's been a long time since I've posted anything here. I'm happy to announce that it's because there's been nothing really to report. Things have settled down a bit and we've been enjoying our , thus far, wet and fridgid summer.

Mim has her fasting bloodwork next Wed (15th) and her weigh-in. I'm not seeing any significant change in how her clothes fit, so not sure how much she's gained, if any. We've been giving her a protein shake for breakfast. She's not thrilled, but we've found a formula that she can stand: 2 scoops of sugar-free icecream, 1/3 cup whole milk, 1 scoop of protein powder, 4 large strawberries, 1 banana, and 1/2 cup of Splenda. Blend it up, stick in a swirly straw, and away she goes - griping the whole time.

Four weeks from today, she, Hubby, and I will be flying to Boston and we really can't wait. She's already packed and unpacked about 10 times. It's all she talks about - seeing her guys again. It will be bitter-sweet since we will be honoring Kate during the Memorial Service. She and Mim had a very special place for each other.

Believe it or not, that's all I've got. I"ll post her numbers as soon as we know them.

Have a great day!

Mum
Title: Re: Mini update
Post by: skeebo1969 on July 08, 2009, 08:45:53 am: Quote from: AndyArrow on June 18, 2009, 03:07:07 am
I know where she is coming from back when I had to try to regain all the weight I had lost I tried so many different protein drinks ... hated all of them.

Carnation instant breakfast drinks ** if mixed with milk** has 13 grams of protein ** 5 grams without** so not exactly HIGH in protein but every little bit helps ... and I liked it. ;)

Those Carnation breakfast drinks are some much better than ensure..... You try one of those recipes they have on the package, not bad at all.
Title: Re: Mini update
Post by: minismom on July 15, 2009, 04:41:46 pm: Mim had her fasting lab done this morning followed by a nice Bob Evan's breakfast (made nicer by mjmel's company). We wanted to "fatten" her up for before her weigh in (did someone mention "faking numbers" in another thread?) Poor baby, we teased her that she wasn't allowed to potty until after they weighed her - she needed every ounce she could get. Even had her weighed with her shoes on, although they made me hold her purse - it had rocks in it ;)

It didn't work. She's lost 2 more pounds :-\. Dr. F is concerned, we're concerned, she's clueless. She now has to have BeneProtein twice a day, a protein shake once a day, drink more water, eat 6-7 small meals / day, and switch to soy milk. Dr. F wants us to weigh her a couple times a week and e-mail the results once a week. She goes back in 5wks - Aug. 20th for another weigh-in. We thought *maybe* it's because she'd grown. Wrong, again - only 1/4 inch in 5mths.

Suggestions?

Mum
Title: Re: Mini update
Post by: fearless on July 15, 2009, 07:41:35 pm: hey mum,
glad it's been kinda quiet for you.
no suggestions for mini other than feeding her up as much as possible on the things she can eat.
i'm sure her boys will take good care of her in Boston and make sure she eats heaps and piles on the weight.
hope hubby, mini and yourself really enjoy Boston and catching up with everyone.
Little Steve
Title: Re: Mini update
Post by: Robert on July 16, 2009, 12:48:46 am: Hi mum.

yeah. no news is good news but it's not so good news, uh? Is soy milk better (more fattening) than regular milk? News to me. I drink close to a 1/2 gallon of milk a day. I love milk. Mixed with cookies, nothing is better, especially if you don't care about the weight thing. The thing is, though,I don't need the weight so I am beginning to care. I don't know what to do. (If my mother was around, she would put a stop to the cookies in a new york minute, no questions asked.)

Like Steven says, I'm sure we'll all do our best to make sure Mini is eating. ice cream any one? 1 scoop or 2?

robt
Title: Re: Mini update
Post by: minismom on July 16, 2009, 08:07:01 am: According to Dr. F, Soy milk has more protein than cows milk (or at least easier to absorb protein) and less choloesterol. I've asked around and SILK seems to be the best tasting, so I'm off in a bit to get some, a digital scale, BeneProtein, and Nutragrain bars. We go through about 8 gallons of milk / week. :o Probably cheaper to buy a cow.

Dr. F is meeting today with a nutritionist and he's going to talk to her about Mim. He said he'll email tonight, tomorrow morning at the latest, and let us know what she suggests. He's also going to ask if she'll come by during our next appointment to talk to us.

We're keeping a diary about what she eats, how long she spends being "active", and how often she goes potty. We'll e-mail it once a week when we send in her weight.

Basquo, while you're out hunting up liquor stores in Boston, find us one that sells SILK.

Mum (who's making cookies and individual pineapple upside down cakes)
Title: Re: Mini update
Post by: Inchlingblue on July 16, 2009, 04:26:55 pm: Although these things are subjective, I personally prefer the taste of the Kirkland brand soy milk, from Costco. Below is a link from a woman "reviewing" the two and she agrees, saying that, as a soy milk convert, she would not have continued drinking it if the only one she had tasted was the Silk brand.

She compares the version that is sold already cold (looks like a regular 1/2 gallon milk container), but I buy the one that is sold in quart containers at room temperature that you refrigerate after opening (this is better as far as it keeps for a long time before opening), the taste is the same.

I'm not sure if you have a Costco nearby but I just thought I'd give you my 2 cents in case she ends up not liking Silk. And for the record, I don't think Silk is bad at all, I just think the Kirkland brand is definitely better.

I also think it comes out a lot cheaper to get the Kirkland brand and according to the lady who reviews them in the link below, Kirkland has more protein than Silk (I have not actually checked to verify but easy enough to do). Kirkland is organic and I don't think the regular version of Silk is.

LINK:

http://www.associatedcontent.com/video/24397/product_review_silk_soy_milk_versus.html?cat=22

I found this link from someone selling a whole case of the quart containers of the Kirkland brand for $5.99, there must be a catch:

http://www.joetlc.com/costco-kirkland-milk-organic-lactose-free-p-5019.html

PS: Both the "regular" and the "vanilla" are good, the regular is better if you'll be using it in place of milk with certain more "savory" recipes.
Title: Re: Mini update
Post by: minismom on July 17, 2009, 07:56:53 am: Thank you, Inch, for the links. I bought the organic vanilla silk (1 gallon) and added her chocolate syrup to it (Hershey's made with Splenda). I didn't tell her what it was for fear she'd not drink it just because. She drank the whole glass and asked for more. After she'd had a couple of glasses, we told her what it was. She thought "silk" sounded cool. She had another glass last night with her beignets ;D

Have a great weekend!
Mum
Title: Re: Mini update
Post by: Inchlingblue on July 17, 2009, 12:29:49 pm: Quote from: minismom on July 17, 2009, 07:56:53 am
Thank you, Inch, for the links. I bought the organic vanilla silk (1 gallon) and added her chocolate syrup to it (Hershey's made with Splenda). I didn't tell her what it was for fear she'd not drink it just because. She drank the whole glass and asked for more. After she'd had a couple of glasses, we told her what it was. She thought "silk" sounded cool. She had another glass last night with her beignets ;D

Have a great weekend!
Mum

yeah@! I'm so suggestible that when I read "beignets" I now have to go out and get some.......lol
Title: Re: Mini update
Post by: Robert on July 17, 2009, 01:16:56 pm: Quote
yeah@! I'm so suggestible that when I read "beignets" I now have to go out and get some.......lol

ditto ::)
Title: Re: Mini update
Post by: MOONLIGHT1114 on July 17, 2009, 05:13:25 pm: Mum, this good news. I'm glad Min thinks Silk sounds cool, lol. Its "Silky Milky" for Min! ;D
Title: Re: Mini update
Post by: AndyArrow on July 18, 2009, 03:24:58 pm: Skip the cow and buy a goat. :D

It can keep the grass down and provide all the milk ... which is supposed to be much easier to digest than cow's milk since it is more like human milk.

I'm glad she likes the soy & I hope this helps her gain some weight!

AA
Title: Re: Mini update
Post by: minismom on July 19, 2009, 05:35:01 am: Just when we thought things were uncomplicating...

She's down 14oz between her weigh-in Thursday morning and her weigh-in Saturday morning. We weighed her at the same time (as soon as she got up - before she ate anything) and in the same place (for some reason, the machine weighs differently depending on which floor we use). So, 14oz in 48 hours. I'm completely dumb-founded. We'll weigh her again on Monday and then on Wednesday and e-mail the results to Dr. F.

I offered to donate for a fat transplant, I've got enough extra ;)

Mum
Title: Re: Mini update
Post by: Miss Philicia on July 19, 2009, 09:26:09 am: So how much total weight loss has there been now since this whole episode began, and what % loss is that of her baseline? I guess my point is if there's an official HIV wasting diagnosis yet, and exactly what will be offered and when in terms of treatment other than protein shakes or what have you.
Title: Re: Mini update
Post by: minismom on July 19, 2009, 05:05:32 pm: She has lost just under 6lbs in about 4mths - right at 10% of her weight (give or take a bit). An official wasting diagnosis hasn't been given, yet. He's going to take a good look at her numbers when her labs come back in a week or so. He's also going to do some research and see what our next course of action should be. Right now he's most worried about having to "separate" the Epzicom into the 2 different drugs and give them to her as liquid. His concern is that the lower doses won't be enough to maintain her u/d load.

He gave us information about the meds usually used for wasting, but said that none of them are appropriate for her, ie. oral marajuana (forgot the name of the drug), an antihistamine that increases appetite, and testoterone gel ( :o ) - a DEFINATE ain't-gonna-happen. He said there were others, but most were used to increase appetite which she doesn't need.

For now, he wants us to try this new course of stuff, weigh her every other day, and see what her weight does. Next course will most likely try to pinpoint down WHY her body isn't metabolizing / absorbing food like it should. Fact is that she could have been losing weight for some time and we just didnt' know it because of the whole "disappearing ID doc fiasco". And, I'm not sure if it has to do with whatever caused her T-cells to take a dip.

So many question that can all be answered "I don't know." At least we now have a doc who is willing to acknowledge there is an issue and try to figure out what to do. That's a huge step from where we've come from.

Mum
Title: Re: Mini update
Post by: Miss Philicia on July 19, 2009, 05:15:10 pm: Is this the same "zerit" doctor or a new one?
Title: Re: Mini update
Post by: minismom on July 19, 2009, 05:22:49 pm: Zerit doctor is GONE! This is now the new doctor we've been seeing for 4mths. We haven't seen Zerit doctor since last September when she disappeared. We have no idea where she is - or if and when she'll ever get back. It was a real blessing, though, because in her absence we found a truly wonderful and remarkable doctor (thank you again mjmel - we still owe you big time :-*) who really is trying to figure everything out.

Mum
Title: Re: Mini update
Post by: Inchlingblue on July 19, 2009, 05:30:57 pm: Quote from: minismom on July 19, 2009, 05:05:32 pm
ie. oral marajuana (forgot the name of the drug)

Probably marinol....a friend of mine gave me one once and I took it along with a nice glass of cabernet. VERY relaxing ;)
Title: Re: Mini update
Post by: minismom on July 19, 2009, 05:35:57 pm: Marinol - that's it. LOL...but there is a slight age difference between the two of you. ;)

Mum
Title: Re: Mini update
Post by: Inchlingblue on July 19, 2009, 05:44:01 pm: Quote from: minismom on July 19, 2009, 05:35:57 pm
Marinol - that's it. LOL...but there is a slight age difference between the two of you. ;)

Mum

I'm surprised he mentioned Marinol because it's used for loss of appetite, not for making people gain weight just by taking it and voila!

Maybe he doesn't realize that Mim's issue is maintaining/gaining weight but that her appetite is not the problem? It sounds like she eats like a little horse, lol.....I'm still trying to look for a beignet after I read that she had her chocolate soymilk with one! I might have to settle for a regular doughnut.
Title: Re: Mini update
Post by: Miss Philicia on July 19, 2009, 05:53:05 pm: I don't understand why the doctor is meeting with the nutritionist instead of the patient. Doesn't sound horribly efficient for a situation that seems to be moving along quickly.
Title: Re: Mini update
Post by: minismom on July 19, 2009, 05:53:29 pm: Honestly, he was answering my question about 1: Is she wasting? and 2: what are we going to do about it. He was giving us a rundown of the drugs that are usually prescribed for wasting and telling us why she can't take them.

MMMMMM beignets - I still have some mix left. Sounds like you just decided what we're having for desert after supper. ;D We have some Community Coffee, too ;)

Mum
Title: Re: Mini update
Post by: minismom on July 19, 2009, 05:57:03 pm: Philly, you posted the same time I did. He met with the nutritionist because she doesn't work where he does - she's 60-70 miles away. He was meeting with her anyway to discuss some of his patients and, after seeing Mim on Wed. and seeing that she'd lost more weight, asked if he could speak to her about Mim. Of course, we agreed. He was also meeting with the nutritionist to try and talk her in to coming to his clinic a few times a month to see patients who need her. His clinic doesn't have a nutritiionist at all. This one specializes in HIV-related nutritional issues. Mim would be one of the patients she'd come to see.

Mum
Title: Re: Mini update
Post by: Miss Philicia on July 19, 2009, 06:01:33 pm: By the way, I know it sounds logical to think that testosterone wouldn't be useful, but I wouldn't dismiss this solution out of hand -- I'm not saying it's the right course, but just don't have a knee jerk reaction about it yet. Mostly I'm saying this after reading this blurb in the past couple of months, though of course it doesn't address mini's age group:

http://www.aidsmap.com/en/news/33899C1D-4206-4A9F-BED6-7618C67E29D9.asp
Title: Re: Mini update
Post by: minismom on July 19, 2009, 06:06:42 pm: Very interesting, indeed. I've got it saved and will print it out and carry it to our next appointment. Thank you. May not be helpful for her now, but will certainly be something to keep in mind for later on.

Mum
Title: Re: Mini update
Post by: AndyArrow on July 20, 2009, 07:49:11 am: Since her appetite is good it sounds like it's more a problem of malabsorption. This can be from something as simple as SIBO http://www.medicinenet.com/small_intestinal_bacterial_overgrowth/article.htm (http://www.medicinenet.com/small_intestinal_bacterial_overgrowth/article.htm)

which I've had and is easily diagnosed & treated or possibly a problem with enzyme production in the small intestine. I'm sure the doc & the nutritionist will be looking at everything and I just wanted to wish her good luck!

Hugs,
AA
Title: Re: Mini update
Post by: minismom on July 20, 2009, 08:16:08 am: Thank you so much, Andy, and see you soon!

At her weigh-in this morning, Mim was down another 2oz. That's a 1lb loss since Thursday. :-\ I was doing some research this morning (think 5am) and came acrossed several mentioning CMV. This was something that she was tested for (via urine sample) at 8wks old. It came back positive. It was followed-up by a blood test.

What we were told was that she tested positive for the antibodies but negative for the virus. However, this was by our ex-PID who also told us that CMV would have NO negative effects on Mim unless she got pregnant. I know now this is crap. >:(

When I e-mail Dr. F on Wednesday to give him Mim's weights, I'm going to request a retest for CMV when we go back 8/30. I'm also going to ask for a cytokines test, especially TNF, IL-1, and IL-6). Also going to ask him to order a stool sample to test for Carbohydrate and fat malabsorption (D-xylose testing). Of course, knowing him, he probably already has these tests in mind. There was a mention about mychobacterial disease, but never mentioned how to test for it.

My brain is now fried and I'm tired. If anyone else has ANY other thoughts (calling Matt), I'm open for them. I'll let you know what I know when I know it. Until then, make it a good one.

Mum

edited to add: I just read the article that Andy sent and it brought up a lot of interesting facts about Mim's infanthood. First, her 1st set of gram-negative bacterial blood infections (she had 4 at one time) were caused by bacteria that people normally carry in their gut, but the immune system usually takes care of. Second, she has diabetes and neuro-muscular issues (CP). SIBO is definately going on our "to test for" list. Andy, hun, prepare for big moochies in Boston!
Title: Re: Mini update
Post by: newt on July 20, 2009, 01:07:09 pm: I think it unlikely to be CMV given mini's immune system is strong at present

It is more likely to be a gut issue, this is hugely problematic with kids HIV-positive from birth, this food/weight/growing thing. The stool test is a good idea (more tests....) as is a micronutrient panel (micronutrients affect absorption).

- matt
Title: Re: Mini update
Post by: minismom on July 20, 2009, 04:44:59 pm: Matt, that's what I was more or less thinking, but a CMV test would be easy enough - remember she LOVES to have blood work done. :-\ What about parasites? I'll mention it and see what he thinks. More tests....one more thing....seems to be the story of her life - perhaps just a really long chapter.

Thanks, babe! Good hearing from you.

Mum :-*
Title: Re: Mini update
Post by: PeteNYNJ on July 20, 2009, 06:05:59 pm: Mom

I had a parasitic infection a few years ago. It took me months before I went to the doctor because I just thought I had travel diarrhea. I dropped A LOT of weight (which I liked) even though I still ate like a horse so a stool test could be insightful. It is really easy to clear up so that is a good thing.

Fingers crossed that it is something they can diagnose easily :)

Pete
Title: Re: Mini update
Post by: minismom on July 21, 2009, 04:05:31 pm: Got an email from Dr. F and here are Mim's latest labs:

July 2009 (fasting) May 2009 (non-fasting)

Cholesterol: 202 172
LDL: 115 62
HDL: 48 34
Tris: 197 378
CD4: 1061 1205
VL: Undectable u/d

Her lipids are still too high, but not much we can do about them - they looked better in May when she had her blood work done after a nice Bob Evan's breakfast!

Mum

edited to add May's labs for comparison
Title: Re: Mini update
Post by: BT65 on July 21, 2009, 06:17:13 pm: Wow, that's a huge difference in her triglycerides. Great!!
Title: Re: Mini update
Post by: minismom on July 29, 2009, 02:31:05 pm: Seems we're finally turning a corner with the weight issue. This is the first week she had constant gains across the board. Previously, she'd lose a bunch, gain a bit, lose more, stay steady, with a negative gain for the week. This week (from last Wednesday to today), she's gained a couple of ounces everyday - ending the week with a total of 1 pound GAINED!! Let's keep our fingers crossed that she can keep it up.

She's been eating 6x /day, we switched her vitamens to an organic (food based) brand so her body could absorb them, and added extra (organic) B-12 as a natural appetite stimulant. As Dr. F says, we're not going to need to address childhood obesity with her any time soon ;)

He also accused her of guilting him into letting her eat bacon in Boston. Believe me, she had help with that one from *someone* here (hint: it wasn't me!)

Here's to another week of gains.

Mum
Title: Re: Mini update
Post by: Longislander on July 29, 2009, 04:08:07 pm: mmmm BACON!!

Good to hear, mum. Keep up the good work!
Title: Re: Mini update
Post by: Basquo on July 29, 2009, 07:44:30 pm: Quote from: Longislander on July 29, 2009, 04:08:07 pm
mmmm BACON!!

Bacon + Lobster = GOOD EATIN' IN BOSTON!!
Title: Re: Mini update
Post by: Ann on July 30, 2009, 09:36:18 am: That's great to hear that Mini's starting to gain some weight. I've got about 15 extra pounds she could have - if only! ;D

Hope she enjoys the bacon. I love bacon and it's probably part of the cause of my extra poundage!

Ann
Title: Re: Mini update
Post by: minismom on July 30, 2009, 03:13:31 pm: Ann, no kidding. I've offered to be a fat-transplant donor ;)

Mum
Title: Re: Mini update
Post by: BT65 on July 30, 2009, 06:48:47 pm: Mum, that's wonderful news about Mim's weight gain! Give her a hug from me (and Poppy).
Title: Re: Mini update
Post by: MOONLIGHT1114 on July 30, 2009, 07:06:02 pm: Mum~ Great news about Min!!!! :D I am happy to hear that the weight is going in the right direction!

~ Cindy
Title: Re: Mini update
Post by: AndyArrow on August 02, 2009, 04:17:22 am: Here's to many more pounds!!!

Everything's better with bacon ... well except maybe the lipids :D

AA
Title: Re: Mini update
Post by: Miss Philicia on August 02, 2009, 08:04:14 am: So how did the doctor explain what has been going on?
Title: Re: Mini update
Post by: minismom on August 02, 2009, 03:03:27 pm: David, she's increased her overall calorie intake, eats 6 times a day, drinks a protein shake everyday, switched to soy milk, and is now taking organic food-based vitamens. We've also increased the amount of water she drinks to avoid dehydration. He was assuming, as were we, that these changes were helping. Not a "cure" but a good start until more testing is done.

However (and that's a really big however), when she was weighed this morning, she's lost a pound since Friday. Basically, everything she had been gaining, she lost. We'll know more when she has her testing done the end of August. Until then, onward and upward.

On a good note, her energy level is normal and her spirits are high.

Mum
Title: Re: Mini update
Post by: AndyArrow on August 02, 2009, 08:35:49 pm: You must be going crazy. I hope he comes up with some answers to what's causing this and more importantly some solutions.

Hugs,
AA
Title: Re: Mini update
Post by: minismom on August 13, 2009, 10:41:34 am: Just a quick note. We had a wonderful time in Boston at AMG. There was quite a bit of walking which wore her out pretty quickly. Her appetite wasn't up to par, but she ate when she had to (aka when we sat her down and told her she wasn't moving until she ate). She loved being with her guys and misses them greatly.

Her weight continues to fluxuate. She'll have a good upward trend for a few days, then lose it all overnight and we start over again. Her energy is waning, but I'm hoping that's just her body recuperating from the trip. Thursday we're back to see her doctor for lab work, lymph node check, and answers.

In 17 days she'll be 9 - so will her virus.

Mum
Title: Re: Mini update
Post by: WillyWump on August 17, 2009, 12:21:46 pm: What a jewel she is! And the Lullaby she sang brought me to tears!

I look forward to hearing about the upcoming Docs visit.

-Will
Title: Re: Mini update
Post by: minismom on August 20, 2009, 09:49:13 pm: According to Doc's new scale, Miss Mim has gained 5 pounds!!!! According to our scale, it's closer to 1 pound. But, hey, as much as she yo-yo'd, she still came out ahead. We'll continue to weigh her every other day and email the results back to Doc weekly.

She does have an "official" diagnosis of wasting. Today she was tested for an entire host of things via blood and urine. We have slips for stool testing that we'll do here at home (she didn't have to "go" while we were in Ohio). No new meds were started. Doc explained that he doesn't want to mask symptoms, he wants to treat the issues. So nothing will be added until we get back all the test results.

In the meantime our newHIV nutritionist said to add powdered egg whites to her food. They are pasturized (don't need cooked), tasteless (can add to anything), long shelf life (on average, 12 months), and they are pure protien without adding fat or cholesterol.

No HIV labs were done. She'll have those done the end of October.

Mum

PS. she wanted me to tell you that her birthday is in 10 days ;)
Title: Re: Mini update
Post by: Robert on August 21, 2009, 12:12:01 am: sounds to me like the Dr's got a good set of scales ~~

robert
Title: Re: Mini update
Post by: Snowangel on August 21, 2009, 10:36:14 am: Good job to you and Mini for the weight gain!

Happy soon-to-be in 10 days Birthday ;D
Title: Re: Mini update
Post by: minismom on August 21, 2009, 01:37:28 pm: Finally found the powdered egg whites at a whole food store. The nutritionist made it sound like it would be a piece of cake to find. Maybe in Ohio, but not in WV. Anyway, the lady said she'd have to order it because it was expensive. The cheapest and smallest she could find is $53.99 for a 5lb bag. :o I told her to order it - Mim needs it and nobody else has it. It'll be in on Tuesday which means I'll have to haul all the kids back out of town to pick it up. I feel like we should sell the house and live in an RV - we're on the road more lately than we are at home.

All of you have an amazing weekend!

Mum

edited to add: LOL, Robert. Doc's scale is great for her, but since it measures 4lbs heavier than our's, I'll stick to the one in our bathroom for me :)
Title: Re: Mini update
Post by: Inchlingblue on August 21, 2009, 01:43:47 pm: If you search for "powdered egg whites" on Google there seem to be some good options.

I guess you already ordered that one but you might want to check online for next time.

Although 5lbs. is ALOT, it should keep her in egg whites for a while, lol
Title: Re: Mini update
Post by: minismom on September 01, 2009, 08:16:09 am: The lab called yesterday to let us know that the D-xylose test ordered is a bit more involved than just a stool sample. Starting this morning, she's not allowed to have any fruit, jam, jellies, or pastries. They contain a sugar (pentalose?) that messes with the test. Then, after supper, she's NPO (fasting).

We arrive at the lab at 7am tomorrow morning and she'll have a blood draw. Then, she'll have to drink some formula. 2hrs later, she has another blood draw. We have to stay there for 5hrs while they collect her urine for that time. The hard part is that she's not allowed to eat or drink anything other than water from dinner tonight until the test is over - about 18hrs. She won't have an IV or anything and I'm sure she'll be more than hungry (and sick?) by the time she's able to eat. I NEVER eat when she's fasting, so it'll be a very long 5hrs for both of us.

According to the lab lady, this is a very rare test and it will have to be sent out of state. It could take a month to get all the results. It was funny that she told me to bring something to comfort Mim after her blood draws and that she would have a couple of people to help "hold" her during the stick. I laughed - Mim LOVES having blood work done. Try holding her down and she's gonna get pissed, though.

Let you know how it goes.

Mum
Title: Re: Mini update
Post by: Robert on September 01, 2009, 12:00:05 pm: It sounds like an ungodly 30 hours. It's going to be a very long day, that's for sure and for sure ol' mini's going to lose a pound or two.

You don't want to go through this again so make sure they do it right the first time. Question, question, question and then ask them one more time and make sure they double-check themselves. Make it clear to them you're not coming back to do it again.

good luck mini and mom

robert
Title: Re: Mini update
Post by: Inchlingblue on September 01, 2009, 12:07:46 pm: I was curious about this test so I looked it up online. One site says:

Do not eat or drink anything (even water) for 8 to 12 hours before the test. Do not exercise before the test. A failure to restrict activity may affect test results.

Your health care provider may tell you to stop taking certain drugs that can affect test results. Drugs that can affect test results include aspirin, atropine, indomethacin, isocarboxazid, and phenelzine. Never stop taking any medicine without first talking to your doctor.

So I guess she can't have much in the way of activity either? I guess they must mean right before the test, not necessarily the day before?

Also, this is one test where it's good news if the result is "positive."

Normal values depend on the amount of D-xylose administered. Usually the test is registered as either positive or negative. Positive indicates that D-xylose is found in the blood or urine and is therefore being absorbed by the intestines.

I wish you both the very best, make sure to report back!

LINK:

http://www.nlm.nih.gov/MEDLINEPLUS/ency/article/003606.htm
Title: Re: Mini update
Post by: minismom on September 01, 2009, 12:49:27 pm: The lab lady didn't say anything about not exercising. But, for the test, I'll have to wake her up to get ready, so she'll be taking the test after a good 9 1/2 + hours of sleep. We were told she can't eat or drink for 12 hours before - which makes it 7pm tonight, or just after dinner. By the time she can eat again, it will have been 17+ hours since she'd eaten last - WAY too long if you ask me. The only med she can't have before is aspirin which she doesn't take anyway. Her HIV meds won't compromise the test.

During the test, they encourage her to drink tons of water - so she'll pee a lot, but she still can't eat. I get VERY grumpy when my sugar drops. I think I'll be making "trips" to the bathroom to eat a breakfast bar ::)

Robert, I've checked and double checked and called the doctor to confirm (and check the link from Inchling). All is well and good with the procedure. I'll bring the laptop and some games that she can play along with some DVD's for her watch. And, of course, I'll bring her school work. It would just be nice if after the 2hr blood test, we could go walk around, go to the park or the mall, or something. I promised the lady I'd bring back all her pee :o. But, they said that we have to stay there. So, we stay.

It will certainly be intresting.

Mum
Title: Re: Mini update
Post by: newt on September 01, 2009, 05:29:34 pm: Well, d-xylose, this is a mother of intestinal absorption tests, and bugger me if anyone really knows what to do if it's negative, or in mini's case, if it's positive, because that will just mean more tests.

Children with HIv from birth have screwed guts, grow different and all sorts of other things, but time, yes...I know a few* who have grown up to be strapping, smart and articulate people.

I hope this sorts things out, or is at least the beginning of a sort, I really do.

- matt

* cos I only know a few
Title: Re: Mini update
Post by: minismom on September 01, 2009, 09:36:07 pm: Matt, I know, I know, and I know. But if there is ANYTHING under this sun or above it that we can do to give her even a fraction of a chance of growing, maturing, and *being* better, we owe it to her to try and find it. Even if it only brings up more questions, or makes medical-types think a different way, or brings the issue to light to the betterment of those who come behind her, then it was still worth it.

Not sure about being "strappy", but she's the most beautiful jr. pozzie I know. ;D

So many "experts" know so little when it comes to the tiniest of pozzies. It's time they learn more.

Mum
Title: Re: Mini update
Post by: Jody on September 01, 2009, 10:17:42 pm: I'll be thinking of mini and mum and your family...Hope the tests go well.

Jody
Title: Re: Mini update
Post by: Ric Wilke on September 01, 2009, 11:09:54 pm: Mini,

Thom and I love you. Hoping that your tests all come out fine.

Mum and Hubby, hug her for us please!

Love you all, Ric & Thom
Title: Re: Mini update
Post by: minismom on September 02, 2009, 03:27:06 pm: WHEW! We made it. It was the longest 5hrs of my life. Mim did SO well with everything. She never complained about being hungry, she drank the stuff she was supposed to, no problems with the bloodwork (twice), and drank her 8oz of water every 30 minutes.

About 3 hours into the test, she got sick and threw up :-\. I was worried it would invalidate the test. The tech said that it won't because she'd already had all her bloodwork and all they needed now was her urine. I think that the bloodwork coupled with the HUGE amounts of water she had to drink, plus her HIV meds, and the "stuff" she had to drink for the test - all on an empty belly just got to her. She laid in my lap for a while, then acted as if it never happened. As we were leaving, she said, "That had to be as bad as being in jail. I don't think I ever want to be in jail." (don't THINK you ever want to be in jail ???)

It'll take a while to get the results, so we're back in a holding pattern. Thanks for all the encouraging words and positive thoughts.

Mum
Title: Re: Mini update
Post by: Snowangel on September 02, 2009, 06:48:37 pm: LOL, she is such a trooper and she is funny to boot. I am glad everything went well today.

Snow
Title: Re: Mini update
Post by: #1 mom on September 03, 2009, 12:08:18 am: I'm glad you both made it through. She remains in my prayers.
Title: Re: Mini update
Post by: next2u on September 03, 2009, 01:03:25 am: that's one awesome lil warrior you have. here's a big cyberhug to lil m ....
Title: Re: Mini update
Post by: minismom on September 03, 2009, 07:53:21 pm: Kids and I came home from the grocery store this afternoon to a message reminding that Mim had an appointment on Tuesday. That's all good and well except I never made an appointment for her. So, I called hoping it was all a mistake. The lady said that it was with the cardiologist. Okay....I asked who made the appointment because I knew nothing about it. It was our EX-PID!! I started laughing. This idiot fell off the face of the earth a year ago, never looking back, never calling. Then she shows up out of the blue NOT making an appointment for us to see HER but ANOTHER doctor?? What the heck is that about?

I told the lady that DrM isn't my child's doctor so any appointment she's made for my child, now or in the future, should be disregarded. I also asked the lady to attatch a note to Mim's file stating that she no longer sees ANY doctor associated with that hospital.

Gotta love the hubris.

Mum
Title: Re: Mini update
Post by: Jody on September 03, 2009, 10:50:57 pm: Dear Mum and Mini...Glad the tough day is over and all went well...The confusion with the doctor was weird, just showing up out of the blue like that. It's good you documented your non-association with this doctor in case a bill for services not rendered is sent out.

Be well folks.

Jody
Title: Re: Mini update
Post by: minismom on September 10, 2009, 07:26:35 am: I got an email from our ever-loving Dr.F, who, by the way, looks a lot like next2's avatar picture. Secret identity maybe? Alter ego? ;)

Anyway, he said that so far all of her extra testing has come back negative (a good thing) and that he's attributing it to "chronic disease progression", which he says is a good thing - she doesn't need to battle something else. I see his point, but don't find it very comforting. We're still waiting on the D-Xylose test.

On a happier note, school is going good. Her issues are her issues and we're trying our best to work with them since we can't seem to move beyond them. She's learning to read and write poetry. Of course Science and History are still her favorites. Tomorrow is our first day of co-op where she'll take a home ec course, an art class, and learn sign language (taught by me). Monday finds us back at dance class.

So, "chronic disease progression", whatever. It's just Mim's progression despite a chronic disease.

Mum
Title: Re: Mini update
Post by: newt on September 10, 2009, 04:06:05 pm: so..

1. When is the trip to the White House?
2. Have you started saving for the Prom dress yet?
3. Thanksgiving's coming and that must equate to a few pounds ++

Quote
So, "chronic disease progression", whatever. It's just Mim's progression despite a chronic disease.

Yer, I like that, this is so true

God bless

- matt
Title: Re: Mini update
Post by: minismom on September 11, 2009, 07:19:47 pm: 1. White House trip is summer 2010. Actually, we're going to the beach for 3 days and DC for 4.
2. Not saving for the prom dress, yet. But we are working on the questionaire and background check information for whomever wants to take her out.
3. Um...about Thanksgiving. She hates turkey (I think she's jaded since eveything she eats is made out of turkey: ham, ground meat, bacon...) But she does tend to linger near the dessert table (where everything is made with Splenda. Shhhhh!)

Matt, my sweet darling, can your avatar get more handsome? You are one humdinger of a beautiful man :-*

Mum
Title: Re: Mini update
Post by: minismom on September 16, 2009, 05:52:01 am: Got the results of the D-Xylose testing - and it was negative (or positive, whichever way you want to look at it - there's no problem). So, again, it's all chalked up to disease progression - 9yrs in and 9yrs old. Her weight dipped a bit about a week ago, but has held steady from there.

Back to the ENT today for a follow-up. Not quite sure what he's going to do since her issue is neurologic.

I did want to tell you that she has decided to enter a pageant on October 2nd for our town's Apple Butter Festival. I HATE the idea of beauty pageants - you have no idea how much - but to her it's more of a talent show, which is fine with me. She filled out a questionaire that will be used for her "interview", then the talent, then the winners are announced. Queen gets to ride on the back of a convertable during the parade on Saturday. She's not a fru-fru dresser and asked if she can wear jeans. I laughed and showed her the dress she'll be wearing - she wasn't impressed :P

Our youngest son wanted to compete in his age group, so we thought why not. He'll also have an interview, talent section (he'll sing while my dad plays the guitar), then they play musical chairs to show good sportsmanship.

That's all from this side of the Mason Dixon. Make it a great Wednesday!

Mum
Title: Re: Mini update
Post by: AndyArrow on September 19, 2009, 12:45:27 am: I haven't been keeping up on Mini lately with all the things going on around here but they are settling down and now I see how much has been going on ... lots of tests & a missed Birthday!

Hopefully, the powdered eggs will do the trick & help her gain some weight.

Good luck to Mini & your young son in the Apple Butter Festival competition!

Hugs,
AA
Title: Re: Mini update
Post by: minismom on September 22, 2009, 06:36:54 am: Andy, hun, you have had so much on your plate, hun, I'm suprised you still know your name. You just take care of yourself and your hunny. We're not going anywhere.

Mim's vision is failing again. Several times during the day, it just goes out. She said sometimes everything gets really blurry and other times things are just "gone". I asked her if the world turns black and she said, "only in spots". I emailed DocF to let him know. He's going to contact Cleveland Clinic and see if they have a peds neurologist who specializes in neuro-occular events. LOL.."events" - at least it's better than "chronic disease progression". Seems the past 17mths have been one giant event.

On the flip side, her ENT gave her an A+ during her visit. The lymph nodes in her neck have gone back down, her ears look good, the candida on her gums is gone, and she still can't track worth a flip. We go back in January (weather permitting).

New dog will be coming home on Saturday. Can't wait!

Mum
Title: Re: Mini update
Post by: BT65 on September 22, 2009, 12:06:57 pm: Mum, great news from the ENT! Yay on that.

So, does Mim have "floaters" in her eyes? Just wondering; not that I'm a doctor or anything. I hope this can get sorted out. Please give her a hug from me and Poppy.
Title: Re: Mini update
Post by: pozniceguy on September 22, 2009, 03:12:27 pm: Just wanted to let you know that I am thinking about you and sweet Mim... hope the eyes thing gets some good attention..... give her a hug for me.

Nick

BTW say hello to Oscar and tell him I really appreciate how he seems to just roll along with all this turmoil
Title: Re: Mini update
Post by: #1 mom on September 22, 2009, 06:43:45 pm: Mum - I'm sorry to hear mim is having vision problems again. I hope Doc F has a referral for you. If he doesn't Dr. Joel Weinstein is a pediatric neuro opthamologist at Hershey. We have not seen him, but that is who Lucas' neurologist said we should see if his opthamologist and vision therapist can't agree on the best course of treatment. I can get you the number and address if you want.
Amy
Title: Re: Mini update
Post by: J.R.E. on September 22, 2009, 07:45:27 pm: Quote from: minismom on September 22, 2009, 06:36:54 am

Mim's vision is failing again. Several times during the day, it just goes out. She said sometimes everything gets really blurry and other times things are just "gone". I asked her if the world turns black and she said, "only in spots". I emailed DocF to let him know. He's going to contact Cleveland Clinic and see if they have a peds neurologist who specializes in neuro-occular events. LOL.."events" - at least it's better than "chronic disease progression". Seems the past 17mths have been one giant event.

Mum

Sounds so very similar to what I've had, most of my adult life.. I get these Ocular migranes ( without the headache), where I can have flashes and loss of central vision for a few minutes at a time.

http://www.allaboutvision.com/conditions/ocular-migraine.htm

A neuro ophthalmologist, will look at the optic nerve and the brain.

Wishing Mim the best.

Ray
Title: Re: Mini update
Post by: Longislander on September 23, 2009, 01:59:37 am: Mum,

Just wanted to stop in to let you know I'm reading, and hoping for some good info on the vision problems, soon~

Glad to hear she passed the ENT, tho.

Paul
Title: Re: Mini update
Post by: minismom on September 23, 2009, 06:54:58 am: Amy, PM me his name and number - thanks! Our last neuro-occular doc was a bust and a sham, so I'm doing much more research before making another doctor day trip. I'm just worried that the answer will be, again, "It's just something she'll have to learn to live with." How many more "things" is she supposed to learn to live with before she decides she's tired of "learning"?

Paul, Nick, and Betty (Poppy, too), thank you for your thoughts and encouragement. I know that this, too, will pass. I just wish it would pass a little quicker and stop coming back for a visit.

I've been reading Mim's medical records, piecing things together and comparing them to my (many) notebooks. It's very interesting what doctors / nurses will write in their notes when they think the person they're writing about (or her parents) will never read them.
Title: Re: Mini update
Post by: minismom on September 30, 2009, 06:59:42 am: Tomorrow is the BIG day! Mim's pageant starts at 4 and youngest son's at 5. Originally Hubby was going to have to miss them due to a test. But, he spoke to his professor yesterday who postponed the test until next Tuesday! So, Hubby'll go to morning class, race home, watch the kids, then race back to school for his night class.

At rehersal Monday, the lady showed the girls their "stage walk". Mim and I practiced last night: right hand on hip, left arm swings, walk, and sway and sway and stop. Both hands on hips, cock that hip and SMILE. Drop the right hand and step and pivot S L O W L Y - head to audience as long as possible. Step and pivot S L O W L Y. Stop, pretty feet - both hands on hip - cock that hip. Drop the right hand, pivot and swing that arm, sway that hip, and walk and walk right off the stage.

That's the way it was supposed to look. It ended up more like: hand on hip, and walk and trip and walk and don't smile like you have to poop, and walk and don't forget to stop. And step and pivot and ooops! and fall and stand back up and laugh and get stuck and laugh and there goes the stockings and drool and walk and hit the wall. PHILLY!!! WE NEED YOU!!! NOW!!!!

Her vision is still going out. It got so bad yesterday, that she had to stop her school work and just close her eyes for about 15 minutes. It's giving her terrible headaches. Unfortunatley, the answer seems to be "she'll just have to learn to adapt." My answer is, "it sucks, and we're getting another opinion." Fine line trying to decide when enough is enough and when resolving oneself to the fact isn't giving up.

Mum
Title: Re: Mini update
Post by: Snowangel on September 30, 2009, 09:18:27 am: Have fun at the pageant. I am sure they will both do great and look adorable.

Sorry to hear about Mims' vision and headaches.

Please tell her I said HI and to work it on the runway! ;D
Title: Re: Mini update
Post by: WillyWump on September 30, 2009, 12:45:39 pm: Oh I'm so EXCITED for Mim! She will do great! Tell her I'm wishing her well!~

-Will

PS- This is how I walk to the coffe pot every morning...
right hand on hip, left arm swings, walk, and sway and sway and stop. Both hands on hips, cock that hip and SMILE. Drop the right hand and step and pivot S L O W L Y - head to audience as long as possible. Step and pivot S L O W L Y. Stop, pretty feet - both hands on hip - cock that hip. Drop the right hand, pivot and swing that arm, sway that hip, and walk and walk right off
Title: Re: Mini update
Post by: #1 mom on September 30, 2009, 06:37:39 pm: I'm sorry mini is still having such problems. Did you google the neuro ophthalmologist or hear anything from your doctor about a referral?
I hope she enjoys her pageant. Tell her to break a leg ;).
Amy
Title: Re: Mini update
Post by: GNYC09 on September 30, 2009, 06:46:20 pm: Good to hear about the pagaent - Mimi will be a star!

I'm sorry to hear about her vision but I hope the 2nd opinion you're getting will lead to a solution.
Title: Re: Mini update
Post by: Ric Wilke on September 30, 2009, 10:52:55 pm: Break a leg, Mini. You are gonna show them what you are made of. We know every one of your "guys" will be walking the runway with you. With all that "swish" behind you you'll do just fine.

Love you, R&T
Title: Re: Mini update
Post by: minismom on October 02, 2009, 07:40:46 am: The pageant was yesterday afternoon and she did SO well!! She didn't win, but it doesn't matter. Hubby and I were more nervous than she was. I thought I was going to faint during the interview portion. We were given a list of 10 potential questions and we worked on them, but she was getting answers mixed up. But she did just fine. Honestly, I couldn't tell you what the question was or her answer.

After the talent portion, I bawled!!! I couldn't stop crying. 2 girls after her and I was still sobbing and quietly clapping for my angel. I've never been so proud of her. She got a rose and a trophy for participating. Her rose is in a vase on our counter. Her trophy is in her bed - she slept with it last night.

Our youngest son, the one who NEVER shuts up (seriously, I mean NEVER - even talks in his sleep!) got on stage and FROZE!!! He's been dancing for 4 years, sings in church, and will talk to anyone. And he totally FROZE! He answered his question, sang his song, played musical chairs (to show good sportsmenship), but he had none of his usual pizzaz. But, he got a big gift bag full of candy, pencils, coloring books, and a bunch of other "cool" kid stuff. So, he's happy.

After seeing the list of 15 parades and events that was in the winners contract, I'm secretly glad they didn't win. Prize money isn't even given out to this year's winners until next year to make sure that all contract obligations are met. If you miss ONE event, you relinguish the crown, title, and forfeit the money. Too much pressure for kids, if you ask me. Plus, the whole point was to have fun - and they did.

Vision is still going in and out. We're in contact with 2 different doctors trying to figure out the best and closest course of action. We should know something in a couple of weeks.

Have a great weekend!
Mum
Title: Re: Mini update
Post by: BT65 on October 02, 2009, 09:39:28 am: Mum, please give Mini and your youngest son a big hi-5 from me and Poppy. It sounds like the outcome was the best-all that other stuff sounds like more than I'd want to do (the parades etc.). I knew she'd do great. Are there any pics?
Luv,
Betty
Title: Re: Mini update
Post by: Robert on October 02, 2009, 11:54:38 am: Quote from: minismom on October 02, 2009, 07:40:46 am
The pageant was yesterday afternoon and she did SO well!! She didn't win, but it doesn't matter. Hubby and I were more nervous than she was. I thought I was going to faint during the interview portion....

After the talent portion, I bawled!!! I couldn't stop crying. 2 girls after her and I was still sobbing and quietly clapping for my angel. I've never been so proud of her. She got a rose and a trophy for participating. Her rose is in a vase on our counter. Her trophy is in her bed - she slept with it last night.

I've met Mini. I know Mini. The girl is amazing. She is wise and bold and nothing fazes her. How many of us would sing an African Lullaby to a room full of strangers?. (I remember in the 2nd grade I had to sing in front of the class and I forgot the words and all I could sing was "Glory, glory halleluia, glory, glory, glory glory...")

When it comes to pagents..and life...I think the kid is a natural. That Mini goes to bed with her trophy shows just how strong she is.

I am so proud of her and her brother and her mother and father.

robert
Title: Re: Mini update
Post by: pozniceguy on October 02, 2009, 12:45:02 pm: big hugs and kisses to mini and Mom. tell Oscar how proud we are of him to do all this

Nick
Title: Re: Mini update
Post by: #1 mom on October 02, 2009, 10:30:56 pm: Congratulations on the pagent! I'm glad they had a good time.
Amy
Title: Re: Mini update
Post by: AndyArrow on October 04, 2009, 01:56:14 am: I'm glad they had fun with the pageant ... thats what it's all about!
Title: Re: Mini update
Post by: minismom on October 04, 2009, 07:58:28 am: Thank you all for being supportive. We were at the pet show Friday afternoon watching my parents' dog, a Chinese Powder Puff Crested named Ginger (who won 1st place), when a lady came up to Mim and told her what a good job she did during the pageant. It was like her winning all over again.

Yesterday morning before the parade, we went out to breakfast at our small town restaurant. It tends to be busy on Saturdays anyway, but during festival weekend when the population of our town goes from 900 to 15,000, it gets REALLY crowded with out of town guests and vendors. Anyway, we were seated at a large 12-person table (there's only 8 of us) which allowed for some spread room. Towards the end, I remembered Mim hadn't taken her meds - bad mommy, I know - so I told her to come and take them. As she was walking over, our middle son asked what would happen if Mim didn't take her meds. I whispered to him that she would get sick and could die.

Our oldest son, who should know good and well better, asked why. Without missing a beat, Mim turns around and says, from the opposite end of the rather large table, "Duh, Because I have AIDS." Hubby turned a scarey shade of green, the out of towners behind us stopped mid bite. Our oldest realized what an idiotic question he'd asked. Mim continued eating her pancake (without bacon, Dr. F) and I cut another slice of my very good grilled ham. Seeing as it looked like Hubby was going to lose his breakfast, I also ate his last piece of homemade toast. ;D

Just another day in the life of a Jr. Pozzie keeping it real.

Mum
Title: Re: Mini update
Post by: Inchlingblue on October 04, 2009, 02:41:45 pm: Not sure if anyone has said this to you before but you're a darn good writer.

I was enthralled reading that whole breakfast scene, so full of rich detail I could practically smell it.

I'm 47 and learning so much about life by way of your descriptions of the wit and wisdom of a beautiful and resilient 9-year old cutie-pie.
Title: Re: Mini update
Post by: karry on October 04, 2009, 10:08:53 pm: Mini, you rock!

I have just spent the last half hour reading about this little angel, and I am proud of her! I often complain about my life, my problems living with HIV...and reading about Mini just made me feel a huge sense of admiration for her!

I hope mum will pass the message to her..because she ROCKS!!!
Title: Re: Mini update
Post by: Lou-ah-vull on October 04, 2009, 10:46:32 pm: that's why she is our OFFICIAL princess! :D

Gary
Title: Re: Mini update
Post by: fearless on October 06, 2009, 01:26:47 am: The breakfast story is beautiful, mum.
And you had me shed a tear when reading about the paegent (and i only ever cry when my football team loses!!!).
Mini is simply wonderful.
Title: Re: Mini update
Post by: pozniceguy on October 06, 2009, 11:58:19 am: Hooray for our brave and beautiful princess, no stigma for her. put out there for all to see. Oscar is such a tremendous guy , but everyone has limits. Love to you all....

Nick
Title: Re: Mini update
Post by: minismom on October 09, 2009, 07:43:37 am: Nick, honestly I think he expected to see pitch forks in the parking lot. Most of our townies know she's Poz. For some reason "knowing it" and "hearing it" are two different things.

She's made another stride. She has started taking control of her medication schedule. Our past routine was as she's eating breakfast, Hubby or I would take out her meds and put them beside her cup. As she was clearing off her dishes, we'd ask if she'd taken her meds. Then, at 8pm, we'd call her up to take her night med. This entire week, she's taken it upon herself to get her own meds at breakfast and again at night. I don't even have to ask anymore - she tells us when she's taken them. Such a huge step in a seemingly simple act.

She's growing up, guys.
Title: Re: Mini update
Post by: minismom on October 18, 2009, 08:04:04 am: Quick update:

Last Sunday was our church's annual family weenie roast. As part of the festivities, some races were organized for the children. First up was the sack race. Mim spent more time on the ground than she did on her feet. Long after everyone else crossed the finish line, she was still laying on the ground laughing. She got stuck in the sack and Hubby and I had to drag her out of it. BUT THEN...

The next race was a straight out "to the trees and back" race. There were 9 kids running. I couldn't believe my eyes - SHE WON!! She got those long legs of her's in gear and ran like death itself was chasing her. Some of the boys weren't too happy about it - nothin' a bit of therapy won't cure. ;)

Then came an obstacle course which, for a dyslexic, is nothing shy of cruel and unusual punishment. She got confused about which way to turn, where to go, and what to do. However, at the end of her run, in true Mim fashion, she gave a very deep bow to the crowd who answered with thunderous applause (and laughter).

Last race - a 1/2 mile relay. Not that every kid had to run 1/2 a mile. It's 1/2 a mile tota around the lake and 4 kids on each team. So no one really ran all that far. For some odd reason, they paired our middle son (9 1/2) against a cross-country middle school runner. Not exactly a fair match up. Then, to make matters a bit more challenging, Mim was running anchor (the last racer). Middle son got beat by a mile (in a 1/2 mile race :P) and the runner after him was on the way slow side. By the time Mim was tagged, the other team's anchor was 1/2 way to the finish line. If I hadn't seen it with my own eyes, I would have NEVER believed it. Out of the blue, Mim kicked it in to high gear and ended up pulling ahead - bringing victory home for her team!!! Her heart was racing like mad and she drank a gallon of water after but GOOD GRIEF - she WON! ;D

Before bed, she had a dose of Tylenol with a Bengay chaser. I've never seen her little legs move that fast - ever.

This Friday we're venturing out again to see her PID. Her weights have stayed low, but steady. Dance class is challenging, but she's having a good time. School is coming along, despite her vision going in and out. We're making some progress with math - got 3 pages done by herself this week with near 100%. BIG progress there. She's reading "The Tale of Despereaux" but can only do a page or 2 at a time before her eyes get fatigued and she has to stop. At that point, our middle son picks it up, then Hubby or I, then back to her... Still working on comprehension and memory skills. Writing is still horrible, but is much less painful than teaching her how to type.

I'll let you all know what happens Friday. Hopefully we can go to every 6mths - but I'm not holding my breath.

Have a great week!
Mum
Title: Re: Mini update
Post by: Inchlingblue on October 18, 2009, 11:20:05 am: That's very impressive! It sounds like she has some genuine athletic ability when it comes to running.
Title: Re: Mini update
Post by: pozniceguy on October 18, 2009, 02:33:27 pm: lots of hugs and love to Mini she gets out there shows what she can do. the rest will come as well as she can also. be patient ( I know how hard that is), give her extra hugs from me.

Nick
Title: Re: Mini update
Post by: #1 mom on October 19, 2009, 05:39:42 pm: Way to go Mini! Girl Power!
Title: Re: Mini update
Post by: BT65 on October 19, 2009, 05:57:43 pm: OMG! This definitely deserves hugs from myself and a couple from Poppy!

GOOD JOB MIM!!! :-* :-*
Title: Re: Mini update
Post by: Longislander on October 20, 2009, 02:28:14 am: WOW!! Way to go Mim!!

Paul ;D ;D ;D ;D ;D
Title: Re: Mini update
Post by: skeebo1969 on October 20, 2009, 03:09:58 am: She is truly an amazing little girl. Wish I had half of her fight and determination, and MOM you are a great mother.
Title: Re: Mini update
Post by: AndyArrow on October 20, 2009, 03:17:52 am: It's a bird, it's a plane no it's Supergirl! Way to go Mini!!!
Title: Re: Mini update
Post by: minismom on October 23, 2009, 11:40:20 pm: We made it through the rainstorms to Mim's ID appointment. Here are the preliminary numbers we have back:

CD4: 946 (down)
%: 44%
Total Cholesterol: 165
HDL: 50
LDL: 170
Triglycerides: 218 :o

We won't have her VL back for a couple of weeks. The rest of her labs (liver, CBC, morphs, ect.) were pretty much where they've always been. Her weight is still below where it should be, but she's been holding steady. She has standing lab orders at our local hospital now so she'll have repeat labs in December and February, then back to the doc in March (as long as nothing is hinkey).

During the exams, Doc is really good about checking her bones and joints. Today he found something that concerned us all - her left knee is "grinding". He said it felt (and sounded) like the cartilage was either wearing away or gone. :-\ His office is scheduling yet another MRI to check it out. I'm amazed Mim isn't glowing from all the radiation she's gotten.

Until we get back the results, he told us not to limit her activity. We'll just watch it to make sure it doesn't swell.

I hope everyone is having a great weekend. I'm keeping it short - been a long day.

Mum
Title: Re: Mini update
Post by: BT65 on October 24, 2009, 07:09:53 am: Mum, I hope the doctor knows a really good orthopaedist who can help Mim with her knee problems. I totally feel for her. Give her a hug from me and one from Poppy.
Title: Re: Mini update
Post by: PeteNYNJ on October 24, 2009, 04:27:37 pm: Mum

Surprised she can do all that great running if her cartilage was wearing away. I would think the grinding would cause some pain, similar to arthritis. Hopefully she just has some noisy joints - I have had noisy ankles since I was a kid but it hasn't progressed at all.

44% is a great number. Hopefully Mini will let me borrow a few % points if I ever need them ;)
Title: Re: Mini update
Post by: minismom on October 25, 2009, 07:23:51 am: Pete, you got me. Her eyes can't track worth a flip, but she can read (big font, double-spaced typed). Cartilage in her knee is worn, or wearing, down, but she runs like blue blazes. She's learned to cope and adapt - and never ceases to amaze me. At her PID visit in August, the knees weren't ginding, now the left one is :-\ All we can do now is wait for the MRI and see what it shows.

She's been complaining about her knees, hips, and ankles hurting/catching for years. Her ex-PID did nothing, her ex-neurologist did nothing, her ex-ortho guy did nothing - hence the "ex". Depending on what the MRI shows, we do have another ortho doc in mind. He's worked on several family members and I REALLY like him.

Doc F asked Mim if it was OK with her to have another MRI since she has to be sedated. She said it was fine as long as she could have Chic-Fil-A after and he doesn't make her wear braces. He said Chick-Fil-A was fine, but no promises about the braces. That earned him a dirty look ::)

Make it a good one!
Mum
Title: Re: Mini update
Post by: BT65 on October 25, 2009, 07:55:33 am: Mum, I wear a brace on my left knee to keep my two large bones in the front from popping in and out. And it alleviates a lot of pain. Tell Mim, if she ever has to wear braces, and wants someone to talk to about it, I'd be happy to chat with her.
Title: Re: Mini update
Post by: minismom on November 09, 2009, 07:22:21 am: ACK! 101.5 - Mim's temp last night before she went to bed. I gave her 2 children's Tylenol which brought it down to just over 99 in a half hour. By the time I went to bed about an hour later, it was down to 98.7. She'd been coughing most of the day yesterday, but it seems to be from drainage in her head and not in her chest. I gave her a dose of Robitussin and she didn't cough during the night. I have Tama-flu but haven't given it to her. I'm just not believing that this is any more than a seasonal cold. I've emailed Doc F to let him know what's been happening. She's still sleeping, but I'll check her again when she gets up.

She's continuing to complain about her hips and knees hurting. Saturday was beautiful here but she didn't want to go out and play. Part of that was due to her not feeling good, but the other part was because, in her words she, "just didn't feel like doing anything but sitting down. My knees just hurt." I've put a call in to the lady who schedules testing to see if, and when, Mim's MRI has been scheduled.

Another unusually warm day on tap today. We'll see how she feels about going out to play.

Make it a good one!
Mum
Title: Re: Mini update
Post by: minismom on November 12, 2009, 08:20:45 am: Good grief! It took an act of unnatural proportions, but we finally got Mim's MRI scheduled. She goes for pre-admition testing on 12/2 at 8:15am, then her MRI is 12/11 at 8am. She's had 10+ MRI's in her life, all of them sedated, and this will only be the 2nd time she's ever had pre-admit testing. It's a 3hr round-trip drive for a 5 minute Hail Mary appointment. Total waste of time, but for whatever reason, they wouldn't let us skip it this time.

MRI at 8am and 11 hours later at 7pm, she'll be dancing the first night of her fall concert.

Her cough is persisting, but her fever hasn't returned since Monday morning. She's still eating and sleeping well, but I don't like the coughing.
Title: Re: Mini update
Post by: minismom on December 02, 2009, 05:09:12 am: Today is pre-admission testing day - AKA Big Fat Waste of Time. We drive over 65 miles (1 way) so some over-paid secretary can take Mim's weight, blood pressure, temperature, confirm our address and phone number, then make the 65 mile trekk back home. Hospital cut their budget so there's not even the highly anticipated sticker at the end.

Mim has had more MRI's than birthdays. Her last one was back in April. For every one of them she's been sedated. Only a handful of times has she had to go through this pre-admission testing bull. Would it be such a hardship to just have a scale and bloodpressure cuff in the MRI suite? Once we're called back, they stick us in a room and ask us the same questions anyway. Since they are so bent on wasting my time, can they not at least READ the chart that's in their hand?

During Thanksgiving dinner, Mim asked if while she was asleep, they'd cut open her knee and fix it. I didn't have the heart to tell her that if Doc finds what's expected (avascular necrosis) that nothing can be done until she's at least 21. How do I tell my child to hang in there another 12 years?

MRI is scheduled for Friday, Dec. 11th, 8am. Please start praying now for a no snow day.

Mum
Title: Re: Mini update
Post by: BT65 on December 02, 2009, 05:57:27 am: Mum, I'm sorry you guys are having to go through this pre-testing crap. Maybe you should mention to the doctor, when you see him, about the inconvenience it causes.

I was diagnosed with avascular necrosis years ago (about maybe 7) in both knees. Tell Mim if she ever wants to chat with someone about it, I'd be happy to try to help. I know it's tougher on kids, because they love to run and hop etc. and I do neither of these anymore. ;)

Give her a hug and smooch from me and Poppy.
Luv,
Betty

Edited to correct the # of years.
Title: Re: Mini update
Post by: minismom on December 02, 2009, 06:13:38 am: Unfortunately, Betty, it's a hospital policy - one they've not stressed about breaking in the past. Doc has no control over it. I asked the hospital if we could have the "stuff" done at another hospital that's 25 minutes away with the results faxed to them. The guy I was talking to acted insulted. I tried to explain my situation but he wouldn't hear it. So, I'm sending Hubby while I stay home and bake sugar-free sugar cookies with the kids. ;D

She's a kid who, just yesterday, broke her glasses rolling down the hill. ::) She likes running, jumping on the trampoline, and dancing - she's a kid in constant motion. On days when it's really bad, she'll ask us if we've noticed that she's been sitting around a lot - that she wants to go out and play, but she hurts. She just wants to not hurt.

Mum

edited to add: In case you're wondering why we don't just have her MRI done at the closer hospital - that hospital doesn't do peds / sedated MRI's. The farther hospital is the closest one that does.
Title: Re: Mini update
Post by: minismom on December 11, 2009, 07:16:59 am: Late last night, we were told that Mim's MRI scheduled for today has been cancelled. In short, her PID, who was accredited to schedule tests in our state (different state than where he practices) through his old practice, hasn't yet been accredited to schedule tests in his new facility. Pissed off? Yeah, I am. But more so disappointed. Insurance has had since November 2nd to figure all this stuff out.

Mim went through pre-admission testing earlier this month that will now have to be repeated before her MRI can be done (once it's rescheduled). Yesterday morning, the hospital called to not only confirm her appointment, but go over thier NPO policy since she was being sedated. Then last night, BAM!, everything cancelled. When I told Mim, she got weepy. She's never done that before. "Don't they know I'm tired of this?" What could I tell her? Nothing. What can I do? Nothing. I'm getting tired of this, too.
Title: Re: Mini update
Post by: Sheri on December 11, 2009, 12:22:51 pm: Even the strongest person gets tired and frustrated. I think most people would have long since hit the breaking point with all of the idiotic insurance bureaucracies and other medical mishaps. She's such a trooper, and it hurts to hear how this is affecting her. My prayers are with you guys. Hang in there, sweet girl!
Title: Re: Mini update
Post by: WillyWump on December 11, 2009, 06:33:22 pm: I've seen Insurance, etc... drop the ball like this and it is damn frustrating, but when they do it to kids, especially my Mim, its infuriating! It breaks my hear to hear she got weepy, big hugs to mim please...

And Mom, you certainly deserve a huge hug, you are such a trooper! And something tells me you are going to wip this into shape somehow.

Thinking about yall!
((((( Mini, Mom, hubby, Etc...))))))

-Will
Title: Re: Mini update
Post by: MarkB on December 11, 2009, 08:16:38 pm: There are no words: just great love sent to you all from here, far away.

:-*
Title: Re: Mini update
Post by: minismom on December 13, 2009, 08:17:19 am: Thank you for your kinds words and thoughts. Her weight, which has been holding steady, is now trending back down. She's down over 3lbs in 2 days. Here we go again. :-\

She asked me last night if she's going to lose her vision. It keeps going in and out. I told her I didn't know, but probably not. She asked if it did, if she could get a big dog to walk her around. I had to smile - and told her yes. So she drew me a picture of what she wants her dog to look like since, after all, if her vision is gone, she won't be able to pick it out. It's hanging on our 'fridge.
Title: Re: Mini update
Post by: Ann on December 13, 2009, 08:31:27 am: Quote from: minismom on December 13, 2009, 08:17:19 am

She asked me last night if she's going to lose her vision. It keeps going in and out. I told her I didn't know, but probably not. She asked if it did, if she could get a big dog to walk her around. I had to smile - and told her yes. So she drew me a picture of what she wants her dog to look like since, after all, if her vision is gone, she won't be able to pick it out. It's hanging on our 'fridge.

It's not often that something makes me cry, but that sure did. Please give that little angel a hug and a kiss from me.

Ann
xxx
Title: Re: Mini update
Post by: BT65 on December 14, 2009, 05:52:44 am: Mum, that's heartbreaking. Tell Mim that Poppy and I send her mucho love, hugs and kisses. And tell her we're pulling for her. :-*
Title: Re: Mini update
Post by: skeebo1969 on December 14, 2009, 08:36:19 am: Big ((((HUGS)))) to Mini....
Title: Re: Mini update
Post by: pozniceguy on December 14, 2009, 05:45:50 pm: Extra big hugs and kisses to that so practical and level headed baby... you are so strong and she is precious. love to you all

Nick
Title: Re: Mini update
Post by: minismom on December 15, 2009, 05:53:07 am: Another self-outting story (she really does crack me up):

Last night the kids and I met Hubby for dinner. All was going well until it was time for dessert - no sugar-free selections available. I told Mim she could pick one thing, don't go over-board, because she has blood work next week.

On her way to get her dessert, she stops to talk to the hostess and waitress (she's forever stopping to talk to someone). She told them that next week she's going to get her blood work done. They're going to suck it up into a tube and then send it to the lab. The ladies both made a face and said "OOOO!" Mim just smiled and said, "No, I like having it done. They send it to the lab and check all my numbers and stuff to make sure I'm healthy because I have diabetes." Then, as she's bitty-bopping away, she turns around and says, with the biggest smile on her face, "Oh, yeah, I have HIV, too!"

I laughed until I thought I'd pee my pants. Hubby just smiled and shook his head. Our 12-yr-old looked like he wanted to crawl under the table. Our Aspie son didn't understand why Mim being "sick" was so funny. When she got back to the table, with her very moderate dessert, Hubby told her that her blood work and "other things" should stay in the family. I told her when she's finished talking to people, she should shake their hand ;D

She has a shirt that says "HIV - Fight It Like A Girl!" I think her next one will say "Poz and Proud".

Mum
Title: Re: Mini update
Post by: leatherman on December 15, 2009, 12:08:07 pm: Quote from: minismom on December 15, 2009, 05:53:07 am
I told her when she's finished talking to people, she should shake their hand ;D
ROFLMAO that cracked me up!
and you wonder where your little daughter gets her in-your-face attitude from :D ;D :-*
Title: Re: Mini update
Post by: AndyArrow on December 15, 2009, 02:19:59 pm: She is such an inspiration ... what a great way to live!
Title: Re: Mini update
Post by: AlanBama on December 15, 2009, 03:27:20 pm: Sending you love and prayers, during this Advent season...

Love,

Alan :-*
Title: Re: Mini update
Post by: Jody on December 15, 2009, 10:11:11 pm: Mini...You're the BEST and you always will be.

Jody :D
Title: Re: Mini update
Post by: minismom on December 16, 2009, 05:17:50 am: Mikie, you don't know the half of it..lol. She's not really "in your face", she's just always been a very open and social kinda person. On shopping trips, she'll point people out and say, "Mom, did you know that so-and-so has a poodle named Fred?" Um, dear, I don't even know who so-and-so is. Where did you meet them? "In the bathroom" is her usual response. ::) Believe me, she's not the one you want to tell your secrets to.

Wishing all of you the very best this season has to hold.
Hubby, Mum, Mim, and the rest of the gang
Title: Re: Mini update
Post by: Lou-ah-vull on December 16, 2009, 09:17:33 pm: Well it is no secret that she is our official Princess! I am hoping things start getting better immediately for all of you!

Gary
Title: Re: Mini update
Post by: minismom on December 22, 2009, 07:36:30 am: Just wanted to wish everyone a very special Merry Christmas. May the coming year bring the very best to each and every one of you. I can't begin to tell you all how much you have meant and continue to mean to our family. Your love and support is insurmountable and invaluable.

Looking forward to the adventures 2010 hold for us.

Much love to you all,
Hubby, Mum, Mim, J, I, E, EB, S, and Ava (dog)
Title: Re: Mini update
Post by: #1 mom on December 22, 2009, 09:21:48 am: Wishing you a very Merry Christmas & a Happy New Year!
Title: Re: Mini update
Post by: aztecan on December 23, 2009, 12:34:00 am: Please give Mim a big hug from me - and give the rest of the family hugs from me too, even hubby.

You can never have too many hugs and, if ever anyone deserved it, it is you, Mim and the family.

BIG HOLIDAY HUGS,

Mark
Title: Re: Mini update
Post by: minismom on December 28, 2009, 06:34:49 am: Near outting experience:

The day after Christmas, we went to the mall to catch some sales. The kids each got some money and it was burning a hole in thier pockets. One of our last stops was Target. While checking out, Mim struck up a conversation with the cashier. He was quite the rasta man - Skeebo would've approved. Anyway, Mim is chatting away about how Christmas went, the snow, her labs, and her sick friends. I stood with great anticipation for the outting - but it never came. She did, however, shake his hand. ;D

This week we will be taking her for 3 class-4 laser pain treatments. Each session will be about an hour long (15 minutes each site x 4 sites - hips and knees). Best senario, she'll be pain-free for 7 - 14 days. However, they will be the first 7 - 14 days in her conscience memory that she'll be pain-free. After that, she'll have to go back for another round of treatments. It's not a permanant solution and won't offer any long-term results. For now, it's the best we can do so we're doing it.

No news as to when her MRI will be rescheduled. At this point, it's safe to say that when it is, we'll have to start all over with the pre-admission testing crap before they'll do the MRI.

Here's to a better 2010 for us all.
Mum
Title: Re: Mini update
Post by: clogger on December 28, 2009, 07:34:55 am: I have a 5 year old son and know how hard and tiring this can all be. Look after you and my thoughts are with you and Mini.
Title: Re: Mini update
Post by: minismom on January 14, 2010, 06:51:49 am: Got a phone call yesterday from Mim's dance teacher. She was concerned about Mim having starring episodes during class. Teacher said that several times while she was going over choreography, she noticed that Mim seemed to be starring "through" her with deadpan eyes. Then, when Teacher would call her name, Mim would look confused and ask, "Which way is my right?" or "What day is today?"

Her VNG done last spring showed, after we ruled out a brain tumor, that she could be having frontal lobe seizures. However, the follow-up EEG showed she wasn't having seizures. I wanted a 48 or 72 hour EEG done (where they hook you up and send you on your merry way with a backpack recorder), but the neurologist we went to wouldn't do it.

Here's my qaundry: I'm really tired of going to neurologists (any doctor really) that has no experience with peds-HIV - or HIV, period. Is there a list or referral system somewhere that offers doctors of different specialties who work with pozzies? Or, do I just need to start calling neurologists in different states and asking until I find one? Someone suggested that I try finding a geriatric neurologist who'd be willing to see her since they are more familiar with the memory and "losing time" issues she's having. Can you see a 9yr old showing up in a geriatric office?

Any and all suggestions welcomed.

Mum
Title: Re: Mini update
Post by: john33 on January 14, 2010, 07:16:40 am: Hi mom,

sorry to hear about mim.

I think your just going to have to hassle the doctors and neurologists until they naildown what's the problem. seizureshave a bad habit of hiding and not showing up on the eeg carried out during the test ( I had the same thing, and they never did find out the trigger), I was lucky in that my Gran knew something was amiss and kept on pushing until they did something.

I know you have enough on your plate already, and unfortunately you have extra now too. But you will get there

Love too mim

john
Title: Re: Mini update
Post by: Inchlingblue on January 14, 2010, 11:29:45 am: I would try the American Academy of HIV Medicine. Rather than using the online form where you put in your zip code etc, I would just call them directly since this seems like a more specialized search. They have phone numbers and other contact info on the site.

LINK:

http://www.aahivm.org/index.php?option=com_content&task=section&id=19&Itemid=168
Title: Re: Mini update
Post by: minismom on January 15, 2010, 11:48:02 am: Inch, thanks for the link. I also emailed the only ASO located in our state - Caritas House. According to their website, they don't serve our part of the state, but they are the ones who sent a nurse to talk to us while we were waiting for Mim's test results and we didnt' live in their service area at that time, either. Hopefully they can help.

At the moment we're also having issues with our local lab. We had Mim's bloodwork done the beginning of December and they JUST faxed the results to Dr. F. Problem is that they only sent her viral load and nothing else. When I called the lab earlier today, I was told they can't "find" the results. I asked if that meant that the other tests weren't done. The lady knew NOTHING and said she'd get back to me.

Later, she called back and said that the order was only for a viral load. I flat out told her she was a liar, as in, "You, ma'am, are a liar." First, they are standing orders. Two months ago, the full gammet of tests were run. So, being standing orders, they wouldn't have changed from then to now. Second, there is no need to draw 5 viles of blood for a viral load test. So obviously other tests were supposed to be conducted with the other viles. Where are the other viles of blood?

OK, so maybe calling her liar wasn't the most prudent thing to do. So what. She asked me what other tests were supposed to be run - I told her to look it up and tell ME what the orders said. But, beware - I have a copy of them in front of me. She rather rudely told me she'd "look into it" and call me back. I'm not expecting that to happen.

The drama never ends. It's getting old. Or maybe I am.

Mum
Title: Re: Mini update
Post by: newt on January 15, 2010, 04:43:47 pm: I really think it's worth checking out John Hopkins

So sent you a PM

- matt
Title: Re: Mini update
Post by: minismom on January 15, 2010, 09:02:00 pm: Got the PM studilucious and composing a letter as we speak. As always, thanks is too menial a word. :-*

Mum
Title: Re: Mini update
Post by: minismom on January 18, 2010, 12:23:45 pm: Got an email from the lone ASO in our state. The only advise she had was for me to contact our ex-PID and our ex-neurologist. I thanked her for her time and told her (politely) that it would be a cold day in hell before I saw either one of them again.

So, still waiting to hear from John Hopkins. My next step is Pittsburgh and Philly. After that, I'm moving on to the Cleveland Clinic in Ohio. Still no word from the lab about Mim's numbers. ENT appointment tomorrow at 9:30 - just me and the 7 kids :o. I'll let you know how it goes.

Paperwork for the MRI still hasn't been approved. Insurance said it could take up to 3mths which would either be February or March depending on when they actually started.

Mum
Title: Re: Mini update
Post by: minismom on January 21, 2010, 11:15:01 am: Mikie (leatherman), I thought you might appreciate this one ;D

Waiting in the waiting room for the ENT appointments, our youngest daughter was complaining that she didn't want to see the doctor that day. Mim on the other hand was laying on the floor coloring - clueless to her sister's rants. Across from us a was an older couple. She and Mim struck up a conversation about not liking to go to the doctors, the number of doctors they each saw and their particular ailments. While this lady was going on about her many medical issues, Mim was taking her's all in stride. Finally, Mim said (as only she can), "Yeah, but you're old. I'm not."

At the end of her ENT appointment, Mim looked over at the ever attentive Dr. Daniel and said, "Daniel (she refuses to call him "doctor"), do you know what a disability is?"
"Yes."
"I have enough of them to write a whole dictionary."
"Oh, hun, I don't think you have any disabilities."
"Really? Then either you're not very smart or you don't know what a disability is 'cause I sure do have a bunch of them!"

His nurse laughed until she choked. I shrugged and joined in. Good ol' Dr. Daniel turned red. And Mim? She jumped out of the chair, told us we were all nuts, and asked if it was time to go.

Mum
Title: Re: Mini update
Post by: next2u on January 21, 2010, 11:21:17 am: hello mom,

that is awesome. thanks for sharing. : )
Title: Re: Mini update
Post by: leatherman on January 21, 2010, 12:52:48 pm: Quote from: minismom on January 21, 2010, 11:15:01 am
Finally, Mim said (as only she can), "Yeah, but you're old. I'm not."
ROFLMAO :D ;D
When my GrandMother and I were comparing ailments the other day, I had to tell her the same thing. Although Mim might think I'm old at 47 5/6 years :D, my Nana is really, really old at 93! She's supposed to be having all these kinds of problems at her age, not me. :D

Quote from: minismom on January 21, 2010, 11:15:01 am
"Really? Then either you're not very smart or you don't know what a disability is 'cause I sure do have a bunch of them!"
LOL You go Mim! That little girl of yours sure does has some spirit and some wisdom beyond her years. Thankfully it's that attitude that is going to keep her going (and keep driving you crazy LOL) and keep getting her through the challenges that life is flinging at her. ;)

Doctors, I swear, even the best of them truly don't understand what it's like on this side of the equation do they? They read about it in books, they hear our stories, but in the end they still don't really understand getting through just the daily struggles, much less jumping the big hurdles. Is it any wonder people like that lady and my Nana don't have a clue either?

love and hugs to you and Mim!
Title: Re: Mini update
Post by: Inchlingblue on February 09, 2010, 03:44:14 pm: FYI, another one for the arsenal (and it's considered a good drug with a low side effects profile):

PREZISTA(R)* Now Approved as Part of Combination Therapy for Pediatric Patients Six Years of Age and Older with HIV

LINK:

http://www.individual.com/story.php?story=114388318
Title: Re: Mini update
Post by: Jody on March 02, 2010, 08:37:56 pm: Hope my favorite young, little, old soul from dem dar hills is doing well this late winter time!

Be well to a great family.

Jody :)
Title: Re: Mini update
Post by: AlanBama on March 03, 2010, 11:17:01 am: A smart girl for sure....

She'll probably grow up to be a stand-up comedienne and make the whole world laugh!

Hugs to you Mom, to our precious Mim, and to all the family......

Love,

Alan