diagnostic criteria

[Guest guest]

Hi there

still trying to learn about this...but I wondered what exactly is the

diagnostic criteria? I printed the pages of the description on the Magic

website

but with a syndrome, I know there can be a great variation and I wonder how

many things he had to have and if there were specific ones that everyone has?

He has 8 things in their first list and four in the second...thats the

things I KNOW he has and the things he is old enough to have.

I have a pretty good relationship with our kid's geneticst and wrote her

last night about it. She hasn't seen him in her clinic since he was 3-4 mos

old. She said she didn't think he has it.

Whether he has this or some other endocrine disease, you guys seem to know

more about the hypoglycemia (the most pressing issue) than the GH group does,

so I might stick around until we know something for sure.

Can anyone give me better diagnostic guidelines? Did anyone find this

syndrome themselves and then mention it to doctors or were you all dxed before

you

heard about it?

thanks a bunch

deb...mom to four fab adopted kiddos... (07.04.96-05.26.03) with

Mitochondrial Myopathy...G, 6, with High Functioning Autism, Hypoglycemia and

Precocious Puberty...B, 4, with VERY mild Cerebral Palsy...and True 1yo, with

Neuromotor Disorder, Hypoglycemia, Myoclonus, ulcers, undiagnosed GI problems

plus severe food allergies (Eggs, Peanut, Milk, Soy, Corn, Rice, Oats and

Crab/Neocate-only), Plagiocephaly and Dysphagia....Married for 12 years to

F--one

swell guy!_ www.caringbridge.org/tn/wells/_

(http://www.caringbridge.org/tn/wells/) (http://www.lifeofloveproject.org/)