Re: is

October 1, 2005

Good news - the FDA approved gh for SGA kids and we have been using

that ruling to get gh for some of our RSS kids as well.

Have you checked out www.magicfoundation.org yet? They are a

wonderful organization that has lots of information about RSS/SGA, a

yearly convention in July in Chicago, tons of medical articles about

RSS/SGA (I group them together because the treatments are so similar

and even the division is called RSS/SGA), and on and on. Between

that organization and this listserve, you will find out everything

you need to know and some things that you never knew existed!

You did not say where you are from, or give your name. Who is

managing your son's care? As one of our members posted just

yesterday, I believe, welcome home. You are now part of a very

large, supportive, loving and wonderful family. You may not ever

meet most of us in person, but we care about each other and our kids

as much as if they were our own.

Jodi Z

Mom to Max (17, RSS) the hiccuping teen and Jenna (20 and a bit

calmer now that we have her meds right!)

October 2, 2005

Welcome to the group. Your story sounds somewhat similar to ours. My daughter

was born at 27 weeks weighing 1 lb 3 oz. Also had oligohydromniosis, but was

born early due to preeclampsia/HELLP. Her NICU stay was 98 days and she has had

all sorts of illnesses and several spats with pneumonia. I have been told she

would quit getting sick so easily as she gets older, but am still waiting on it

to happen. She will be 4 in February. We have been doing growth hormone

therapy for about a year now. Growth hormone has actually been approved for

idiopathic short stature which basically means extremely short. I think it's

only available to children below a certain percentile, 5th, I think not real

sure though.We went through that same issue at first, but when doctor changed

the diagnosis a little it was fine after that. Aubrey seems to stay around the

same weight forever also. It was nice " meeting " you.

Tonya

grisellemontes wrote:

Hi! I just want to introduce my son to this group. He was born

premature at 28 weeks and weighted less than 2 pounds. I had too

many complications during pregnancy including oligohydramnio and

placenta abruption but despite all these complications, he was born

relatively healthy, breathing by himself, etc. He stayed 68 days in

NICU until we reached almost 5 pounds, but after that, he has been

very healthy. He will be 4yrs old by the end of October but he is

little, he is 22 pounds and 35 inches tall. Although he doesn't

have any feeding problems, and he eats a lot, he doesn't gain much

weight. I think he has been around the same weight for months.

Last year he was diagnosed with SGA (Small for Gestational Age) and

was supposed to start the GH therapy but our health insurance said

that the therapy was not approved for SGA and we were unable to do

it by ourselves been so expensive. The doctor said we can wait a

little longer. We went to different doctors looking for guidance

and help and recently he has been diagnosed with RSS. Now that the

diagnose changed I hope that we can start with the therapy. He

started school this year and he is very smart, he has been saying

things like " I am tall " and now I am concern about his self esteem.

I really hope I can manage that. I already contacted a psychologist

for orientation.

I found this web site looking for information about RSS and it is

good to know that we are not alone and that we can share some of our

concerns with other people. For now, I don't have too much

information about what is going to happen and how we are going to

manage this but at least I know a place where I can go for

information and support.

October 2, 2005

Hi. Glad to have you aboard here.

I have a son, , who was three in May and he also has RSS. He

currently weighs 24 lbs, but he has a feeding tube. It has been a

long road to get here. He remained in the hospital one day shy of

turning three months old. Discharged weighing barely 5 lbs.

I am so glad you found our site here. You will learn so much and

everyone on here is wonderful and supportive. Did you see the Magic

Foundations website in your search? They are nothing short of

WONDEFUL! They hold an annual Convention each July in Chicago and

some of us go and learn from doctors and just hang out together.

Also, the RSS expert out of New York City, Dr. Harbison, attends the

Convention and gives seminars that are so informative and she even

sees the RSS kids for consults. She is amazing and if there is

anyway to get your son to her, I highly recommend her. Others on

here will tell you the same thing.

Once, again, welcome, and please feel free to share more information

with us. We are here to help and support you! ) Hope to hear

from you again soon.

Jodi R.

's mommy

> Hi! I just want to introduce my son to this group. He was born

> premature at 28 weeks and weighted less than 2 pounds. I had too

> many complications during pregnancy including oligohydramnio and

> placenta abruption but despite all these complications, he was born

> relatively healthy, breathing by himself, etc. He stayed 68 days

in

> NICU until we reached almost 5 pounds, but after that, he has been

> very healthy. He will be 4yrs old by the end of October but he is

> little, he is 22 pounds and 35 inches tall. Although he doesn't

> have any feeding problems, and he eats a lot, he doesn't gain much

> weight. I think he has been around the same weight for months.

> Last year he was diagnosed with SGA (Small for Gestational Age) and

> was supposed to start the GH therapy but our health insurance said

> that the therapy was not approved for SGA and we were unable to do

> it by ourselves been so expensive. The doctor said we can wait a

> little longer. We went to different doctors looking for guidance

> and help and recently he has been diagnosed with RSS. Now that the

> diagnose changed I hope that we can start with the therapy. He

> started school this year and he is very smart, he has been saying

> things like " I am tall " and now I am concern about his self

esteem.

> I really hope I can manage that. I already contacted a

psychologist

> for orientation.

>

> I found this web site looking for information about RSS and it is

> good to know that we are not alone and that we can share some of

our

> concerns with other people. For now, I don't have too much

> information about what is going to happen and how we are going to

> manage this but at least I know a place where I can go for

> information and support.

October 2, 2005

hi welcome to our great big " family " of support. have you gone to the

magic foundation's web site yet? www.themagicfoundation.org they are

a non-profit org for families of children and adults with growth

disorders. you can get alot of info there. also where do you live?

there is an expert dr in nyc for rss, dr harbison. she is definitely

worth going to see. also the FDA has changed the ruling on ght being

provided for RSS/SGA children so he should be able to get it.

my son is 4 1/2yrs and is 30lbs 38 1/2 " tall. he eats rather well

too. he doesnt have all the gut issues some on the RSS kids have, he

is more on the mild side.

jodie c

October 2, 2005

Hi ... I just wanted to let you know that I just joined this group

too and no matter where you are from ... these people are a wealth of

information! The Magic website that everyone is suggesting is

wonderful ... they send you information so fast it is amazing! It is

great to have so many fast friends and Sheldon you are a wonderful

greeter. I do believe " Welcome Home " is the phrase! My son Noah

just turned 3 in Sept, he weighs around 20 lbs and is just over 32

inches tall (good grief I almost put 23 and realized that was how

long was when he was born and that I was making a huge mistake).

Dawna

Matt 12, 10, Kaitlyn 8 and Noah 3 (RSS)