[tri-med] Re: Info on Neurologist Appointment Please!!!!

Fawna,

With Philina (I love her name), did you just discover that she was allergic 
to the milk and soy after she stopped formula, or is there some kind of test 
or what? He is on the Isomil soy formula right now. My grandmother and 
mother keep saying they think the congestion is allergies, I've tried 
diffrent laundry detergents, I don't wear any perfume or hair products, 
Changed his soap and shampoo a million times, and even tried changing mine, 
thinking it could be irritating him, removed all the "smell good" candles 
from the house, bought the really expensive air filters, and nothing has 
helped. I was just wondering if there was something else I could do.
That is crazy about Philina's black eye, I bet you were really upset back 
then, thinking she got punched! Also, crazy that it took that long for a 
test to show anything. Since Jackson's birth, I look at doctors in a totally 
different way, I so think they are still smart, but before I think that I 
thought they should and would know the answer to anything and everything 
having to do with their particular specialty. Thanks so much for the info!
----- Original Message ----- 
From: "Fawna Lockwood" <fawna33@xxxxxxxxxxxxxx>
To: <tri-med@xxxxxxxxxxxxx>
Sent: Tuesday, September 14, 2004 1:10 PM
Subject: [tri-med] Re: Info on Neurologist Appointment Please!!!!


> >At Jackson's 4 month check-up, his ped. recommended
>>a neurologist follow-up...He has partial duplication
>>2p (13-21). My question to all of you is: What might
>>they be checking for? Any and everything you all might
>>know of, I would much rather be prepared, than to walk
>>in there knowing nothing and being told something awful.
>>He seems to be doing great lately...I would appreciate
>>anything anyone could tell me.
>
> Oh Jennifer, that can be a really nasty menu that you
> want to preview.  Rare trisomy kiddo's probably have
> potential for more off the wall neurological possibilities
> then anything else.  But if he's "doing great lately" odds
> are your ped just wants a base line taken in case anything
> ever does show up. And that's not a bad idea.  Better that
> what he's normally like is well documented in case something
> ever does go wrong.
>
> Most common would probably be seizure activity.  Could be
> mild...could be severe...or could be like my child and
> never have a seizure in his life.
>
> Philina didn't have anything neurological show up until
> she was over a year old, and then it was so off the wall
> and so short in duration that they weren't positive I even
> knew what I was talking about.  And her next episode of
> temporary paralysis wasn't until she was around 8, and on
> the opposite side of her body.  EEG, Cat Scan, MRI, nada
> but a little brain damage in her balance center deep in her
> brain.  One of those moot discoveries since she was roller
> skating already.  Next suspected episode around age 12, and
> so short in duration we totally missed it, if it happened at
> all.  I think it did in hindsight, but there was a fight on
> the school bus that day and the driver thought her black eye
> was from an accidental misplaced punch.  Thing is though she
> still has it almost 10yrs later.  Last episode she was almost
> 19 yrs old, and we finally got an answer from an MRA that
> makes some sense.  It also means I was right back when she
> was a yr old that she'd thrown a little stroke.  They just
> weren't buying into that she could do that, be totally
> paralyzed on one side, and then totally recover within a
> matter of hours.  But it's possible with Moya Moya Syndrome.
> What all those episodes had in common was occurring within
> weeks to 3 months after a surgery.  Only treatment for it is
> a children's aspirin daily to decrease the likelihood of
> developing more blood clots that cause those little strokes
> in her custom made capillary system that oxygenates her brain.
> Then of course there's Aussy Alex's Shapiro Syndrome with it's
> sudden temperature plunges.  But you see, odds are Jackson
> won't have either of these.  If he has anything at all it will
> probably be something uniquely his.
>
>>besides AWFUL congestion ALL the time, which makes it hard
>>for him to eat at times  (He has a swallow test and upper GI
>>on the 22nd).
>
> Now this one sounds like allergies.  Philina was the same way.
> Turned out she was allergic to dairy products & soy, and that's
> why no formula we'd ever tried seemed to set well for her.
> Ended up putting her on Gerber's Beef Heart formula until they
> stopped making it, and then I made her almond milk, or rice milk.
> Good news is eventual she out grew the allergies.
>
> Fawna, mom to Philina 21yrs (PT6p & Moya Moya Syndrome)
> http://home.mindspring.com/~fawna33/
>
>
>                  Building ___ooOOoo__ Rainbows
>                       www.trisomyonline.org
>                  Families Helping Families On-line
>
> 

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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