Are you seeing results with GHT?

[Guest guest]

We are still debating about GHT. All research provided to us by our

endo shows that RSS patients are " less responsive to GH " compared to

other patients that were either growth hormone deficient or small for

gestational age. I want to know your results. Thank you.

[Guest guest]

Hi-

We have definitely seen positive results since Dominic has been on

GHT since Sept 2002. His " Growth Rate Per Year " has increased

tremendously. I am at work and don't have the actual figures with

me so I can't provide those to you. There are many studies which

Dr. H and Dr. Stanhope presented at last year's conference which

demonstrate GHT does work with RSS kids so hopefully someone more

knowledgeable on this listserve can either point you to those or

explain them to you. I have found that some endos that do not treat

many RSS patients are not as knowledgeable about the most recent GHT

studies. From my own experience, the first two endos we had did not

feel GHT would increase Dom's final height much. But, these endos

had very limited knowledge about RSS. As far as SGA is concerned,

Dominic is SGA and RSS so perhaps your child is as well? I am sure

someone else will respond. Good luck on making your decision, it's

good that you are weighing your options carefully.

F.

-- In RSS-Support , " mrsdebo2004 "

wrote:

> We are still debating about GHT. All research provided to us by

our

> endo shows that RSS patients are " less responsive to GH " compared

to

> other patients that were either growth hormone deficient or small

for

> gestational age. I want to know your results. Thank you.

[Guest guest]

My son was growing at a rate of about 2 " a year prior to starting GH.

He is now growing at a rate of about 4 " per year. So his growth has

basically double since starting Gh and he is actually moving toward

the growth chart rather than parallel to it at about 3 standard

deviations below the 3% line. I would say it is making a huge

difference for my son! (Not only in growth!) He has been eating

better, gaining more weight and has generally been healthier since

starting GH!

Blessings,

Carmen, mom to Storm, RSS, 8y8m, 48 " tall and 50 pounds

[Guest guest]

Please tell me what research your endo provided to you. THis makes

me SOOO mad I could spit. I have every medical journal article ever

published on Silver Syndrome and GH, and on GH and small for

gestational age, and your endo simply isn't correct.

There were some early studies done 5 or more years ago, that didn't

have as good of results. But there were many problems with these

studies -- no control groups, and most of the studies used VERY low

dosage amounts (none of which are used today) and what they

called " discontinuous " growth hormone -- meaning they did not give

GH every day, sometimes only 3-4 times a week.

Children who are growth hormone deficient usually have the best

results with growth hormone; however, some studies are finding that

RSS children are getting very close in their response, depending on

several predictive factors (age at Tt start, midparental target

height). There are few studies that compare RSS vs SGA, simply

because the crossover is too vague. They used to think that RSS

kids would have BETTER response than SGA kids; if not better, it

would be the same, but not worse.

The first 2-3 years on GH are the most important as those are the

catcj-up years; most kids then begin to follow their new growth

curve.

In monitoring the stats on gosh, more than 50 kids on GH in our

division, we are finding that most seem to grow less than 2 inches a

year prior to GH; then they grow 3-4 inches in year 1, 3-4 inches in

year 2, 3 inches or so in year 3, and then it tapers off to 2 inches

a year after that.

My daughter has grown approximately 13 inches in 3 1/2 years. She

has gone from the 0% tile in height to almost the 65th percentile.

My husband is 6'4 " so that helps. Her target is the 75th

percentile. We give her her shot religiously every night, almost at

the same time every night (some studies indicate consistency is

better) and have only missed about 5 shots in 3 1/2 years.

Everytime I am too tired to get up again (we give her the shot after

she is asleep) my husband always reminds me " if she was diabetic,

would you stay in bed and not give her her shot " and then we rock-

paper-scissors for who is getting up....

Please let me know what studies your endo is giving you. I would be

happy to email you a listing of all of the current studies. In

addition, I hope to have them added to MAGIC by the end of this

month. You can then get free copies yourself and hand deliver them

to your doctor!!!

Salem, MAGIC

> We are still debating about GHT. All research provided to us by

our

> endo shows that RSS patients are " less responsive to GH " compared

to

> other patients that were either growth hormone deficient or small

for

> gestational age. I want to know your results. Thank you.

[Guest guest]

I have to just echo what others are saying. Our son Matt has been on

growth hormone for a year. He has gained at least 6 inches and 9

pounds. He is on the 10th percentile for growth for the first time

since he was a baby. It has been incredible.

I would definately ask your doctor for his resources about the less

responsive. I would double check that!

If you want to see " photos of results " check out the photo section

under Matt H. They say it all.

Good luck with your decision.

Beth

> We are still debating about GHT. All research provided to us by

our

> endo shows that RSS patients are " less responsive to GH " compared

to

> other patients that were either growth hormone deficient or small

for

> gestational age. I want to know your results. Thank you.

[Guest guest]

I am interested to find out what types of " risks " are involved with

GHT. Has anyone talked about what possible problems with using GHT

an what type of risk we are taking by putting our children on GHT.

Jenni

> > We are still debating about GHT. All research provided to us by

> our

> > endo shows that RSS patients are " less responsive to GH " compared

> to

> > other patients that were either growth hormone deficient or small

> for

> > gestational age. I want to know your results. Thank you.

[Guest guest]

Each of the pharmaceutical websites has a list of the possible side

effects -- keep in mind that any reaction, even a single episode, in

the FDA test cases has to be recorded.

With RSS kids, there have been no side effects recorded outside

whatever is already listed (unlike for Down's Syndrome kids who can

develop tumors).

Joint pain is one side effect that is common. I can't recall, but

headache comes to mind. My memory serves me from our research

(which was 3 years ago) was that almost all of the side effects are

very " noticeable " immediately, so that you could stop the GH and the

side effect would go away.

The other side effect that is happening with RSS and SGA kids is

that their fasting serum and glucose insulin levels increase

significantly while on GH. Studies are abound on this subject right

now -- they think it is inherent with these kids due to their low

birth weight (the whole insulin resistance risk). However, the

studies have found that the children's levels go back to pre-

treatment levels within 6 months of being off growth hormone.

This is still a negative risk, though, while they are on GH. So it

is important that nutrition be watched, exercise encouraged, and

regular blood tests done (your peds endo will be aware of this).

However, keep in mind, and I have written this before, that for our

RSS and SGA children, growth hormone therapy has been found to have

benefits for not only height, but it increases their weight,

DECREASES their blood pressure, increases their muscle mass,

decreases their adipose tissue (body fat), increases their bone

mineral content, and DECREASES their lipid levels (cholesterol, etc).

> > > We are still debating about GHT. All research provided to us

by

> > our

> > > endo shows that RSS patients are " less responsive to GH "

compared

> > to

> > > other patients that were either growth hormone deficient or

small

> > for

> > > gestational age. I want to know your results. Thank you.

[Guest guest]

<

>

Can you explain the above to me alittle better?? Liam's Endo did not explain

any of this to me before starting GH. I research all the other side effects,

but have not heard of this one.

Mom to Liam (3 1/2 years old 34 3/4 " 27 lbs

SGA, Hypothyriod, Epilepsy.) Started GHT 5/18/04