Re: Re: physical anomalies question...and 'the look'

February 8, 2006

Chris

thanks for your email. I appreciate all your info. Both of my (living)

boys seem to have issues that don't fit into nice neat packages. I think True

just seems to have several disease processes going on...which is just

bizarre...I don't think ALL of them will fit in any syndrome but I think some

of the

physical issues I have brought up on him wiht docs from the beginning and

then the new issues with hypoglycemia and growth must add up to something

syndromic?

I had his PT look at his pinkie's today...she said she felt the same thing I

did. I think there is a curve but it is slight for now. Also, she said the

dimples at the base of his spine are normal, but we didn't look for hip

ones. We see the geneticist in April and hopefully the endo in the next few

weeks (IF they EVER make the appt).

I wish Dr Harbison would look at True's picture and see if he has 'the

look'. I have looked at the pictures on the website and while some of them are

similar...there is a vast difference. Also, this may just be me, but the older

the kids are, the less they have 'the look' and/or look similar. I would

love to get her opinion at some point but I don't know how we would swing 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

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