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Author Topic: Mini update  (Read 55462 times)

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Offline lavidaloca

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Re: Mini update
« Reply #50 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
"Knock, And He'll open the door
Vanish, And He'll make you shine like the sun
Fall, And He'll raise you to the heavens
Become nothing, And He'll turn you into everything"
ó Mawlana Jalal-al-Din Rumi

Sept. 2008 first tested HIV+ / VL 11,000... undetectable since 01-09.

            CD4 / %                  CD4 / %
09-08    19 (1.7%)     01-10    42 (9.00%) 
01-09    23 (2.56%)   03-10    55 (7.00%)
04-09    31 (4.41%)   06-10    55 (9.00%)
07-09    27 (3.11%)   08-10    44 (9.15%)
09-09    39 (5.09%)   10-10    59 (12.41%)
12-09    37 (5.03%)   02-11    91 (12.61%)
                                05-11  130 (18.00%)

Offline minismom

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Re: Mini update
« Reply #51 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
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline minismom

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Re: Mini update
« Reply #52 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
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline Ann

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Re: Mini update
« Reply #53 on: February 14, 2009, 09:12:51 PM »
Could this be migrane? What she describes is how I could describe my own migranes.
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline minismom

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Re: Mini update
« Reply #54 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
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline Ann

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Re: Mini update
« Reply #55 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
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline lonewolf

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Re: Mini update
« Reply #56 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
"To all within the sound of my voice, I appeal: Learn with me the lessons of history and of grace, so my children will not be afraid to say the word ďAIDSĒ when I am gone. Then, their children and yours may not need to whisper it at all."  Mary Fisher

Offline Ann

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Re: Mini update
« Reply #57 on: February 15, 2009, 01:03:11 PM »
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? :)
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Online Miss Philicia

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Re: Mini update
« Reply #58 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.
"Iíve slept with enough men to know that Iím not gay"

Offline Ann

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Re: Mini update
« Reply #59 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.

Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline PeteNYNJ

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Re: Mini update
« Reply #60 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

Offline minismom

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Re: Mini update
« Reply #61 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
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline YaKaMein

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Re: Mini update
« Reply #62 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?
09/11 Endocrine Consult
08/11 CD4 328 14.9% VL 0
 Disc'd Bactrim DEXA -3.1 Tscore
03/11 CD4 338 14.7% VL 0
11/10 CD4 300 14.3% VL 0 <20copies
07/10 CD4 336 14.0% VL 0 DEXA -2.7 Tscore
03/10 CD4 308 13.4% VL 0 Vit D normal
01/10 Began FOTO
11/09 CD4 274 13.7% VL 0 Chol 173 Trig 131
07/09 CD4 324 13.5% VL 0 DEXA -3.1 Tscore lumbar
03/09 CD4 207 10.9% VL 0
11/08 CD4 227 10.3% VL 0 Chol 176 Trig 156
04/08 CD4 228 9.5% VL 0
01/08 CD4 194 9.0% VL 0
09/07 CD4 176 8.3% VL 0
03/07 CD4 130 9.5% VL 0 Chol 261  Trig 227
12/06 CD4 109 6.4% VL 0
09/06 CD4  88 5.5% VL und desens'd rtd to Bactrim
08/06  Began Atripla
07/06 CD4  59 5.0% VL 145 Chol 117 Trig 104
06/06  Bactrim rash, X2 Dapsone
 EFV & Truvada Chol 128 Trig 131
05/06 CD4  6 (2.0%) VL 78667 only V179D mutation Dx PC MAC

Offline Ann

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Re: Mini update
« Reply #63 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
« Last Edit: February 17, 2009, 12:17:47 PM by Ann »
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline minismom

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Re: Mini update
« Reply #64 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
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline minismom

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Re: Mini update
« Reply #65 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.
« Last Edit: February 18, 2009, 02:55:19 PM by minismom »
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Offline Inchlingblue

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Re: Mini update
« Reply #66 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.

Offline umfowabo

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Re: Mini update
« Reply #67 on: February 18, 2009, 04:14:08 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
« Last Edit: February 18, 2009, 04:58:09 PM by umfowabo »

Offline #1 mom

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Re: Mini update
« Reply #68 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]
Amy

Offline minismom

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Re: Mini update
« Reply #69 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


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"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Online Miss Philicia

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Re: Mini update
« Reply #70 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.
"Iíve slept with enough men to know that Iím not gay"

Offline Snowangel

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Re: Mini update
« Reply #71 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
Of all the things you wear, your expression is the most important

The heaviest thing you can carry is a grudge..

One thing you can give and still keep...is your word.

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Offline Robert

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Re: Mini update
« Reply #72 on: February 18, 2009, 10:44:45 PM »


It's been a long, cold winter Mum.  all my prayers for littlemini.

robert
..........

Offline AndyArrow

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Re: Mini update
« Reply #73 on: February 19, 2009, 12:24:37 AM »
My heart goes out to you and your family.

AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline mjmel

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Re: Mini update
« Reply #74 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

Offline minismom

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Re: Mini update
« Reply #75 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
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Offline lonewolf

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Re: Mini update
« Reply #76 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
"To all within the sound of my voice, I appeal: Learn with me the lessons of history and of grace, so my children will not be afraid to say the word ďAIDSĒ when I am gone. Then, their children and yours may not need to whisper it at all."  Mary Fisher

Offline PeteNYNJ

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Re: Mini update
« Reply #77 on: February 21, 2009, 10:34:40 PM »
Big hugs from Pete :)   

Mini is a trooper!

Offline minismom

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Re: Mini update
« Reply #78 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
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www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline Longislander

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Re: Mini update
« Reply #79 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
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline Peter Staley

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Re: Mini update
« Reply #80 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

Offline minismom

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Re: Mini update
« Reply #81 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
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline AlanBama

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Re: Mini update
« Reply #82 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
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline Robert

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Re: Mini update
« Reply #83 on: February 24, 2009, 09:24:03 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.
..........

Offline minismom

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Re: Mini update
« Reply #84 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
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline minismom

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Re: Mini update
« Reply #85 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
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"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline Inchlingblue

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Re: Mini update
« Reply #86 on: February 27, 2009, 04:17:07 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

Offline minismom

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Re: Mini update
« Reply #87 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.
« Last Edit: February 27, 2009, 04:45:04 PM by minismom »
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Offline Inchlingblue

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Re: Mini update
« Reply #88 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!@

Offline minismom

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Re: Mini update
« Reply #89 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

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"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline umfowabo

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Re: Mini update
« Reply #90 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

« Last Edit: February 27, 2009, 08:17:31 PM by umfowabo »

Offline Ric Wilke

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Re: Mini update
« Reply #91 on: February 27, 2009, 10:04:10 PM »
Mini and Mum,

We love you both.

Ric & Thom with Miss Tucker, too.

Offline minismom

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Re: Mini update
« Reply #92 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
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"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline #1 mom

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Re: Mini update
« Reply #93 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
Amy

Offline minismom

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Re: Mini update
« Reply #94 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
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline Jeffreyj

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Re: Mini update
« Reply #95 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!
Positive since 1985

Offline Lou-ah-vull

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Re: Mini update
« Reply #96 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
Diagnosed Oct. 2005
10/05:  367 (26.2%), 24556 VL
01/06:  344 (24.6%), 86299 VL
04/06:  374 (22.0%), 87657 VL
05/06:  Began HAART 05/15/06, Combivir/Kaletra
07/06:  361 (27.8%), 1299 VL
10/06:  454 (32.4%), 55 VL
01/07:  499 (38.4%), UD
02/07:  Switched to Atripla 2/8/07
04/07:  566 (37.7%), UD
08/07:  761 (42.3%), UD
06/08:  659 (47.1%), UD
01/09:  613 (43.8%), UD
07/09:  616 (47.4%), UD
01/10:  530 (44.2%), UD
07/10:  636 (48.9%), UD
01/11:  627 (48.2%), UD
07/11:  840 (52.5%), UD
01/12:  920 (51.1%), UD
07/12:  857 (50.4%), 40
10/12:  UD
01/13:  710 (47.3%), UD
07/13:  886 (49.2%), UD
01/14:  985 (46.9%), UD

Offline minismom

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Re: Mini update
« Reply #97 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")

www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline Lou-ah-vull

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Re: Mini update
« Reply #98 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
Diagnosed Oct. 2005
10/05:  367 (26.2%), 24556 VL
01/06:  344 (24.6%), 86299 VL
04/06:  374 (22.0%), 87657 VL
05/06:  Began HAART 05/15/06, Combivir/Kaletra
07/06:  361 (27.8%), 1299 VL
10/06:  454 (32.4%), 55 VL
01/07:  499 (38.4%), UD
02/07:  Switched to Atripla 2/8/07
04/07:  566 (37.7%), UD
08/07:  761 (42.3%), UD
06/08:  659 (47.1%), UD
01/09:  613 (43.8%), UD
07/09:  616 (47.4%), UD
01/10:  530 (44.2%), UD
07/10:  636 (48.9%), UD
01/11:  627 (48.2%), UD
07/11:  840 (52.5%), UD
01/12:  920 (51.1%), UD
07/12:  857 (50.4%), 40
10/12:  UD
01/13:  710 (47.3%), UD
07/13:  886 (49.2%), UD
01/14:  985 (46.9%), UD

Offline minismom

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Re: Mini update
« Reply #99 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
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

 


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