At 11:18 AM 9/9/99 -0500, Julianne wrote:

>Since they won't give you a referral to Dr. Rapp (which is reasonable in
today's $). Have you tried finding out what doc's/specialists they do have?

Yes ... when I first took her off gluten years ago she did
GREAT ... except she was malabsorbing and started wasting
away.  We took her to the State Ped Gastro ... who promptly
put her back on MILK formula (with me waving blood tests
showing dairy allergies - she promised it'd be ok).

Within FOUR days her ears had ruptured and were bleeding.
*sigh*  This is criminal!  We did move to Nutramagin and
then to Progesimil.

Her MD did a blood test for gluten ... but of course she
was gluten free when it came back normal.

>My experience is that if you have a set mind, others
will too- in the opposite direction. If I remember
>correctly, you really haven't even tried a complete
elimination diet yet of any of her suspected allergens.

Oh yeah we've had her off her allergins for years ...
as best as I can.  Unfortunately her Holistic MD
who helped her years back moved.  He did the allergy
bloodwork and of course the 'State' Doctor threw
them down and said "I don't believe in that crap".
I've been trying to 'jump through the hoops' for
years and my rope is getting shorter and shorter.
She's FIVE years old and only weighs 30 pounds on
a good day!  And that's eating ALL the time and
pushing everything down her I can.

>Get her off the formula for a week or so, and off
all traces of other suspects. A week won't kill her,

It might ... she loses weight like MAD when I do
that.  She has these 'episodes' (probably gluten
ingestion) where she has diarrhea and throws up.
It's frightening.

>and it may help (except for the withdrawal).
I know Kelsey on FAST just wen't through
>a complete elimination, and is ramping up
on good foods.

She gets the best ... the only thing that is not
the best is Progestimil (pre digested milk formula)
which I give her once every 4 days.  But without
that she totally wastes away like a little Nicaruaguin
(sp) baby.  It's pathetic.

Keep your ideas coming ... Don't helping me a lot
(as usual).  I've got to get her to someone that
KNOWS I'm tired  of losing valuable growth /
development time with this crap = and it's out
of my league now.

This is an example of why her parents did not
think that they would be able to be good parents
to her.  This is horrible and it's been since
day one with all of these disabled kids.  And
the incidence of allergies is so high with them!
The Assistant at her Docs told me yesterday they
don't do Nutritional work NOR allergy testing.
WHAT?

Love,

Amy