Mini update

[#1 mom]

Wishing you a very Merry Christmas & a Happy New Year!

[aztecan]

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

[minismom]

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.

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

[clogger]

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.

[minismom]

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

[john33]

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

[Inchlingblue]

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

[minismom]

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

[newt]

I really think it's worth checking out John Hopkins

So sent you a PM

- matt

[minismom]

Got the PM studilucious and composing a letter as we speak.  As always, thanks is too menial a word.

Mum

[minismom]

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 .  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

[minismom]

Mikie (leatherman), I thought you might appreciate this one

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

[next2u]

hello mom,

that is awesome. thanks for sharing. : )

[leatherman]

Finally, Mim said (as only she can), "Yeah, but you're old.  I'm not."

ROFLMAO 
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  , my Nana is really, really old at 93! She's supposed to be having all these kinds of problems at her age, not me. 

"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!

[Inchlingblue]

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

[Jody]

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

[AlanBama]

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