Re: Re: Growth Hormone Therapy

November 26, 2005

Hi Jody - Thanks so much for responding. I think it's Dr. Harbinger - the

female doctor who practices in New York City. My daughter has taken Dalia up

there to see this doctor and was then referred to an endo here in Atlanta. The

two doctors are working closely to determine the correct dosages, etc. I'm so

glad to hear you've had good results with the hormone therapy. Your son's

height sounds within the very acceptable range. I have a 19 year old son myself

who does not have RSS or any other health issues (thank God) and he is 5'10 "

which he just recently achieved. He has grown about 3 inches in the past year

and a half. So, all in all, it sounds like the therapy has worked. Are there

any side effects that you know of? Also, did your son's appetite improve on the

therapy? Our Dalia really doesn't like to eat but from what I've been reading,

she's a better eater than many of the others. But, it's a battle with each meal

and the amounts she eats are far from normal. Also, she will not willingly put

any food into her mouth. She has to be fed everything and it all has to be

pureed - lumps make her gag. She's had physical therapy since she's two months

old and she has been having speech/feeding therapy for about a year. She's now

going to see another feeding specialist and also start occupational therapy.

She has low tone in her upper body and has just started to walk - at 23 months.

She's a little trooper and smart, funny, and adorable.

I appreciate any and all information I can get. I know my daughter, Dalia's

mom, researches and keeps up with all the information about RSS and has many

contacts through the Magic Foundation. My heart just about breaks for her

because it's so hard to always be worrying and working to help her child and as

her mother, I feel like I need to help in every way I can. So any information I

can get will help me to help her.

Thanks so much to everyone for any info they can give. Hope everyone had a

wonderful Thanksgiving.

Judi

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