Re: Pat

[Guest guest]

Pat,

I learned something new today. I knew RSS was considered a form of dwarfism,

but I

didn't know it fell under the category of primordial dwarfism. I remember

seeing a show

on Maury Povich about primordial dwarfs, and the one son the show were much

smaller

than our kids. I did a quick search about primordial dwarfs & found there are 6

types. On

the website below, there is a form a medical questionnaire you can download if

you believe

your child may be a primordial dwarf. It's intended use is to mail to a Dr.

Judith Hall for

research purposes. However, I was thinking this would be a good thing to print

& fill out

to take with us to doctors, especially new ones. I don't know about everyone

else, but I

can never fit everything about on the form provided by the doctor's

office, let

alone remember everything (including dates) about

procedures/surgeries/milestones, etc.

This might also be a good way to outline your child's history for a first visit

to Dr.

Harbsion. If anyone is interested in this, you can download the 23 page form

(pages 4-21

are the " meat " of the patient history) at the following website:

http://www.primordialdwarfism.com/medmain.htm

Then click on primordial dwarfism questionnaire. The website has other

interesting info

too, but I do not think that any of the children who are in the profiles section

have RSS.

Kim C.

Hey ,

>

> You are right. RSS is a form of primordial dwarfism, so I don't think you're

> wrong saying that. I, however, don't usually get into that with people I

> don't know. I usually just tell them that has a growth disorder

> called RSS, and that he is small for his age. Most people mistakenly think

> it's because he's g-tube fed! LOL

>

> Pat (g-ma to , RSS, 3 yrs 3 months old, G-tube, GHT)