Re: GH question for RSS adult females-long (response back)

January 29, 2006

Thank you for your candour - it was unbelievably terrific to hear

from you. My husband and I certainly had a great chuckle over the 3

lb. cake comment. Somewhere along the way you clearly achieved the

greatest gift and that is to love yourself first - I'm touched by

your insights.

charlene

> HI. I am curious with the opinions of RSS adult females. I

have one

> RSS daughter and one SGA possible RSS daughter. The question of

> whether or not to use GH has come up, and we are leaning one way

and I

> would just like your opinions and personal feelings on it...such

as if

> you could go back and gain some height in childhood...would you?

This

> is solely a height question...I would appreciate any feedback. You

can

> e-mail me privately at anderkat3@y...

>

> thanks!

>

> mom to Autumn 24 mos RSS, Summer 6.5 mos SGA, Ocean 3.5

yrs,

> Skye 7.5 yrs

>

January 30, 2006

I think your words say it better than my post, so ditto!

> > HI. I am curious with the opinions of RSS adult females. I

> have one

> > RSS daughter and one SGA possible RSS daughter. The question of

> > whether or not to use GH has come up, and we are leaning one way

> and I

> > would just like your opinions and personal feelings on it...such

> as if

> > you could go back and gain some height in childhood...would

you?

> This

> > is solely a height question...I would appreciate any feedback.

You

> can

> > e-mail me privately at anderkat3@y...

> >

> > thanks!

> >

> > mom to Autumn 24 mos RSS, Summer 6.5 mos SGA, Ocean 3.5

> yrs,

> > Skye 7.5 yrs

> >

February 6, 2006

I am an RSS adult, and I'm glad my parents accepted me the way I was

and declined GH. I was definitely raised as a special, unique,

beautiful girl...and now I'm married to a wonderful man who loves

his petite little woman. He's a hair under 6' and I'm 4'10. I'm

perfectly content being who God made me...I was created exactly as

He had in mind. I think if I had received GH I would have struggled

with poor self-esteem feeling that I wasn't created " good enough " on

my own, but that I needed something " extra " in order to be

acceptable.

> > > HI. I am curious with the opinions of RSS adult females. I

> > have one

> > > RSS daughter and one SGA possible RSS daughter. The question

of

> > > whether or not to use GH has come up, and we are leaning one

way

> > and I

> > > would just like your opinions and personal feelings on

it...such

> > as if

> > > you could go back and gain some height in childhood...would

> you?

> > This

> > > is solely a height question...I would appreciate any feedback.

> You

> > can

> > > e-mail me privately at anderkat3@y...

> > >

> > > thanks!

> > >

> > > mom to Autumn 24 mos RSS, Summer 6.5 mos SGA, Ocean

3.5

> > yrs,

> > > Skye 7.5 yrs

> > >

February 7, 2006

Hi ,

I am glad you have found this group. You will learn alot here that wasn't

known about RSS when you were a child. You sound like a wonderful person who is

doing well as an adult and had very supportive and encouraging parents as you

were growing up. What a great blessing!

I have a 21 year old daughter that was diagnosed RSS (incorrectly) for the

first 15 years of her life. We travelled from our home in Alaska to New York

when she was 15 to consult with Dr. Harbison, who is an expert in RSS, and

learned that Charissa just didn't quite have " the look " . We then had another

consult with genetics here, who decided to do more testing, and when she was 17

a fairly new chromosome test found a small deletion. This particular deletion

had not been found in anyone else, so now Charissa has a one-of-a-kind

diagnosis. But during her growing-up years we had a working diagnosis of RSS,

so I am quite familiar with the medical developments over the years.....it is

amazing how far medicine has come.

Every parent who is now offered the choice of growth hormone therapy for their

child still faces a difficult decision. Many years ago the growth hormone

theapy was a more risky choice, as the growth hormone source was cadavers. But

the synthetic growth hormone has been on the market for nearly 20 years, and the

same risks of contamination & such just aren't there. Doctors now believe that

growth hormone therapy for many of these kids does benefit other body systems,

not just final height. But it is a very difficult and personal decision if there

is no definite diagnosis of growth hormone deficiency.

In Charissa's case, her body was growth hormone deficient - it produced almost

NO growth hormone. So choosing growth hormone therapy for her wasn't a hard

decision for us, similar to " choosing " to give insulin to a diabetic - her body

was missing something it would normally have & need. In our case, we feet that

God placed us in the right place in the right time to get our daughter the best

medical care available. The synthetic GH had come on the market less than a

year prior to her diagnosis of growth hormone deficiency, and at that time we

were living in CA an hour from the only manufacturer of synthetic GH. So our

doctors had easy and frequent contact with the medical advances and

state-of-the-art technology, and in a way we helped blaze the trail for so many

on this list. The nightly growth hormone shots became as much of a part of the

bedtime routine as brushing teeth and nothing more or less. Today Charissa is 5

ft 2 inches tall and barely remembers those shots!

in Alaska, mom of Charissa (not RSS, but all the issues plus some)

RSS-Support wrote:

Date: Mon, 06 Feb 2006 22:03:26 -0000

From: " alliee_82 "

Subject: Re: GH question for RSS adult females-long (response back)