Re: 10 Month Old Just Diagnosed with RSS

[Guest guest]

Welcome! Is your child a son or daughter? And what is your name?

I'm (Salem, since there are several of us named )

and my daughter has RSS, she is 8 1/2 years old. She is now doing

relatively great. Birth 5lbs 17 " , 12 months she was about 15

pounds, stayed 19 pounds for about 18 months!, stayed 27 pounds for

a year! At 4yrs 6 months, she was 27 pounds and 38 inches tall (my

husband is 6'4 " so her height was always above average for an RSS

child).

After 4 years of growth hormone therapy, and multiple medications

for reflux and other GI problems common to RSS and SGA kids, she is

now a whopping 53 " tall and 54 pounds (about 65th percentile in

height and 20th percentile in weight).

Make sure you call tollfree 800-3MAGIC3 to the MAGIC Foundation, or

go on line www.magicfoundation.org. Get all their RSS basic

literature from them. Sadly, so far this is the only non-profit for

RSS/SGA kids in the US. But more than 300 families are members of

the RSS/SGA division, and we as a group are kicking butt in getting

more and more information created and written and disseminated, so

we can educate physicians and parents.

You'll learn a lot through MAGIC and through this listserve. Take

it all in for a while, remember that characteristics vary a lot so

not every child has every thing another child has. Ask any

questions.

Good luck! Salem

>

> Hello! My child was just diagnosed with RSS - I thought that it

> would be a good idea to talk with other parents that are going

> through this. The doctor's have given us so much information.

> My husband and I are dealing with this the best we can. Most of

our

> questions are what is going to happen next, what can we expect,

etc.

[Guest guest]

Sorry . I was a little nervous writing the message and I

should have included more information.

My name is and my husband is Rob. Our daughter is LeeAnn - she

weighed 4lbs 13 ounces when she was born and 17 1/4 inches long. She

stayed in the room with us after birth. Continued to gain weight and

then at her 9 month check up she only gained 7 ounces and her right

side is about 1/2 to 1 inch shorter than the left. The doctor

decided that it was time for some answers. UVA comes here to our

city and we were able to make an appointment with them. Prior to

that I had one of the doctor's tell me that he thought that she had

russell silver syndrome. Right now she weighs 13lbs 14 ounces and is

24 3/4 inches tall.

So which state do you live in? If you don't mind me asking. We live

in Virginia and I have not found anyone else who is going through

this same situation. In fact my doctor told me that he thought that

they had one more case of this at the practice. Right now we are

seeing two differnt doctors at the practice and they have not been

through this before.

This is our first child and of course we want more but I must admit

that I am a little worried that my next child might have RSS not that

that would be bad.

I really appreciate you emailing me back. I think that it will be

great to be apart of the group and hear what other people are going

through, ect.

THANKS again and I look fowrading talking with you.