Re: Growth Hormone Question

[Guest guest]

Hi!

First off congratulations on starting such an important step!

While it is true our RSS children's bodies do produce adequate levels of growth

hormone, their problem is the body is unable to make use of it properly for some

reason to sustain growth.

So doctors give the GH which, in a simple sense of explanation, floods the body

system allowing for a greater chance of some GH getting used for growth.

I've heard recently that research is starting to wonder if perhaps during hypog

episodes the body is not producing the GH at all (or very slightly) and that our

RSS children are not experiencing those episodes when they have the GH study

done to determine levels. There was another theory Jenn S. was just talking

about recently that was another possible explanation--both of which (for

whatever reason--I can't remember) meant that the standard way of testing for

proper GH production might not be reliable for our kids. That was my

interpretation of it anyway.

Whatever the reason/cause at this point you are using the GH to flood the

system.

Deb

Growth Hormone Question

Quetzie's first supply of GH arrived yesterday! The home health nurse

is visiting today. But I was wondering if I can pick your brains a

bit...The literature that came with the Nutropin stated it is for use

on patients with not enough GH or with other renal complications. I'm

confused because Quetzie's GH levels are within range, so if she is

producing acceptable ranges of GH but her body isn't utilizing it

correctly, why does throwing more GH on board work?

A question I forgot to ask the endo last week. Please enlighten me if

any of you have the answer:) Nonetheless, we are all very excited

about her new " magic wand " .

[Guest guest]

Most Rss kids have normal GH levels, this means their bodies make GH

correctly. What we suspect is that the receptors for GH do not take

it in as normal so adding more to the system seems to help. The tests

that are run tell you how much is being made, but only growth rates

can then tell you how much is being used. For my son we have found

that adding GH to his system allows more to be used and puts him at a

normal growth rate.

SOrt of confusing, but I hope it helps.

Pattie

>

> Quetzie's first supply of GH arrived yesterday! The home health nurse

> is visiting today. But I was wondering if I can pick your brains a

> bit...The literature that came with the Nutropin stated it is for use

> on patients with not enough GH or with other renal complications. I'm

> confused because Quetzie's GH levels are within range, so if she is

> producing acceptable ranges of GH but her body isn't utilizing it

> correctly, why does throwing more GH on board work?

> A question I forgot to ask the endo last week. Please enlighten me if

> any of you have the answer:) Nonetheless, we are all very excited

> about her new " magic wand " .

>

[Guest guest]

I was the same way as you. Up here in Canada, I didn't know anyone else with RSS

and was quite alone.

I, too, didn't want my son to have nightly needles. The whole thing sounded way

to risky, scary and complicated. Then I found this web site and started to read

and read and found all the kids were doing it and were growing. That made a very

scary decision so much easier for me. You are right, this is a great place.

Deb

Fwd: Growth Hormone Question

Thank you for your response, both explanations certainly sound reasonable.

I'm the cautious type, which took me so long to get started. I was just

telling my mother yesterday how thankful I am to this support group, because

eventhough I don' t post often, I certainly read all your posts. And just

being

familiar with all of your successes with GH has made me feel comfortable with

moving forward. I probably would not have done so without all your

information...I would have stayed on the fence way too long... and we all now

time is

not on our side...thanks to you all and this site that makes it all

possible...Quetzie's getting medicine that will help her:)

-mom to Quetzie 4.9 yrs., 21 pounds