Re: question about GHT (new to list)

[Guest guest]

Hi! Welcome the list. There are many families on this list who

choose GH and many who don't.

We choose to use it. My son, Jake is 4 years old and began GH about

15 months ago. He has grown almost 6 inches in that time. He is

currently about 39 inches. Not only has he grown at a tremendous

rate, he is stronger and healthier than ever. We are thrilled at

the results!! He is able to do so much more physically than he

could one year ago. While he is still smaller than his peers, he is

definitely catching up to them.

Obviously this is a tough decision and a very personal one.

I wish you and your family the best,

Alison

> Hi,

>

> I was wondering how much effect GH can have on the growth of RSS

> children. I would really appreciate to hear first hand experience,

> rather than theoretic discussions by doctors.

>

> Now about our family. I have 2 children, a boy (Devon, 9) and a

girl

> (Paige, 5). It's the oldest who is very small at 41 " 30lbs. We've

> had a long and painful time, not knowing what caused his small

size.

> Then last year he was diagnosed to have RSS. I still have my

doubts

> but it's the only thing we have. Currently we're deciding whether

he

> should use GH. We were very much opposed to it, but now we're

> starting to doubt, because his small size is so evident. His

younger

> sister is now a head bigger than him. I do not want that we later

> have to be sorry that we didn't try everything we could!

[Guest guest]

Hi,

We've been using GHT on our son, on, since November. In just

three months, he grew one inch (which was more than he grew in one

year)! We're anxious for our next appointment in April so we can see

how much he's grown again.

Since we began GHT, on's appetite has increased tremendously.

We feel it was a great decision for us. The doctor actually wanted

us to start on on GHT when he was only 2, and we were nervous

and did not. Now that I started it, I don't know what we were so

scared about. I think it was one of the best decisions we made.

Harrion is excited about growing and it's helping his self-esteem, as

well.

Good luck with your decison.

Amy

-Mom to on, age 4

> Hi,

>

> I was wondering how much effect GH can have on the growth of RSS

> children. I would really appreciate to hear first hand experience,

> rather than theoretic discussions by doctors.

>

> Now about our family. I have 2 children, a boy (Devon, 9) and a

girl

> (Paige, 5). It's the oldest who is very small at 41 " 30lbs. We've

> had a long and painful time, not knowing what caused his small

size.

> Then last year he was diagnosed to have RSS. I still have my doubts

> but it's the only thing we have. Currently we're deciding whether

he

> should use GH. We were very much opposed to it, but now we're

> starting to doubt, because his small size is so evident. His

younger

> sister is now a head bigger than him. I do not want that we later

> have to be sorry that we didn't try everything we could!

[Guest guest]

hi!!

first off welcome to the list, what is your name? my son christopher

is 3 and we started ght on feb 16 of this year. and he has gained

8oz in a month!!! he only gained about a pound for the whole year

last year so it is definitely doing something!! he too is eating

like a little piggy now. last week he actually had 2 slices of pizza

for lunch!! he now asks to eat more often. i am glad we started the

ght. he has adjusted well to getting his shots (we do it at night

before bed while he is awake). good luck in your decision!!

jodie(one of many on this list)

(nicholas-6 nonrss, christopher-3 rss 23lbs 33 " ght genotropin .6,

johnathon-9m nonrss)

[Guest guest]

Hello - I don't see your name! My name is . I wanted to

correct one thing someone else wrote. If your child is diagnosed

with RSS, I would recommend that you do NOT rush off to get a GH

stim test. The reason I write this is because the vast majority of

RSS children show GH levels within the normal ranges. Recent

studies show that there are problems with how they utilize their GH,

and call them " GH insufficient " (similarly, it appears that they

don't use their calories properly either, so they need MORE calories

and MORE GH than the average child, in order to grow).

Some insurance companies can use a " normal GH stim test " to DENY

coveage of growth hormone therapy. Some endos like Dr. Harbison do

not even order a stim test, they wait to see if the insurance

company requires it. If they say they want it, sometimes it is best

to still not get it, but to try providing copies of the research on

GH kids (if you have Dr. H as your physician, her office does all of

this for you).

Anyway. We started this database on RSS kids a couple of years

ago. And I will tell you that the numbers are pretty consistent for

RSS kids. For those that are 3-4 years or older and NOT in puberty,

they seem to grow about 1.5-2 " a year before GH.

Then during the first year of GH, they seem to grow 3-4 inches. The

second year, a bit less, let's say 3-3.5 " . Then depending on where

their target height percentile is, the growth tapers off until they

are back to growing about 2 inches a year again, now following along

a NEW curve way above where they were before GH. This new curve

completely depends on a) parental height; how well the physician

adjusts GH dosages; c) whether or not the child enters puberty or

not; and then the misc. stuff.

The fact is that for each year that your child grows MORE than 2

inches a year, your child is GAINING (or catching up) to their peers.

So.... use my daughter as an example.

She started GH in October 2000 when she was 4 yrs 9 months, and 38

inches tall.

So, in 3.5 years, without growth hormone therapy, she would have

grown to about 45 inches tall (7 inches growth in 3.5 years). Below

the 3rd percentile for 8 years of age.

However, instead she is now 52 inches tall (65th percentile) -- a

GAIN upon the other children of an " incremental " 7 inches. Now,

remember that my husband is 6'4 " and I am 5'4 " so her target height

goal is 5'7 " as an adult or the 75th percentile.

Hope this explains things a bit. S.

> Hi,

>

> I was wondering how much effect GH can have on the growth of RSS

> children. I would really appreciate to hear first hand experience,

> rather than theoretic discussions by doctors.

>

> Now about our family. I have 2 children, a boy (Devon, 9) and a

girl

> (Paige, 5). It's the oldest who is very small at 41 " 30lbs. We've

> had a long and painful time, not knowing what caused his small

size.

> Then last year he was diagnosed to have RSS. I still have my

doubts

> but it's the only thing we have. Currently we're deciding whether

he

> should use GH. We were very much opposed to it, but now we're

> starting to doubt, because his small size is so evident. His

younger

> sister is now a head bigger than him. I do not want that we later

> have to be sorry that we didn't try everything we could!

[Guest guest]

Hi

I am new to the RSS/SGA world, my daughter hasnt started GH yet, and

have noway near as knowledge as and others do. But I wanted

to passs also that our endocrinologist said that GH stimulation test

for my daughter is not necessary for her to start GH. For insurance

purposes it is now based on growth statistics alone, if your child

meets that requirement GH deficiency is not a criteria that needs to

be met as well. our endo also said that RSS diagnosis or any other

confirm diagnosis for that matter is also irrelevant to starting GH

(again, insurance should not ask for diagnosis of a syndrome if

growth statistics meets GHT criteria). Ofcoarse my daughter is very

small and GHT is not even a question. For those on the borderline on

the curves, insurance may require additional justification.

Sabina