Re: Storm Update and question about labs

[Guest guest]

Carmen, I would recommend that you find out exactly what Storm's IGF-

1 and IGF-BP3 levels were this last time; what they were in prior

years; what they were before he started GH, and what the normal

range is for his age. Put these in a chart format, one after the

other.

It used to be thought that if the IGF-1 levels were way above the

normal range (which runs something like 100-450) for several years

(on GH), then there was a risk for later developing cancer. This is

why these blood tests are run and doctors review them regularly. It

is rare that a child's IGF-1 levels get that high.

However, recent studies done by physicians (not part of the

pharmaceutical FDA study) found that they believe now that it has

more to do with what they call the " free IGF-1 " (which is somehow

the combination of where the IGF-1 level is in comparison to the IGF-

BP3). I can't explain it all here -- but you need to chart the

numbers, and then demand better explanations from your physicians.

I emailed Dr. Stanhope about another child from our convention, who

had an IGF-1 of 561 (outside the normal range) and he felt based on

all the other factors that we included, that staying on GH was

appropriate, and he sent me this article on the free IGF-1. I trust

Stanhope more than most because he has continued to publish but was

not part of the original Pharmacia study. I am not dumb enough to

think that any physician doing studies doesn't rely on some

pharmaceutical monies (just as MAGIC accepts funding). But I also

believe that I have to trust some, as I do MAGIC, that their

missions will not be altered from the funding sources. Stanhope is

one such physician (and I know Harbison is, as I have heard some

stories of how she has blasted some studies about her disagreeing

with how they might be running their study, ha!) She has never been

one to be shy in speaking her mind.

I wouldn't panic at this point. You need a lot more information.

Here is an example of 's IGF-1 levels :

IGF-1 IGF-BP3

2000 (before starting GH) 60 3

2003 300* 3.5

2004 167 3.2

* this jump up to 300 scared us; but Dr. H said not to panic; and a

year later, it was down to 167.

Salem

>

> Hi guys,

> Sorry I can't keep up with the list much anymore. With 5 or 6 kids

> and school, etc! Well, life is pretty crazy in the Snyder house.

> anyhow, Storm just had his 5th set of ear tubes placed Wednesday

and

> he can hear better already!!! He is 49.5 inches tall and 55 pounds.

> (he is 9years and 4 months old)

> We got some lab tests results back and the note says that his

growth

> factors are high, but they will keep his GH dose where it is due

to

> poor growth last time. It also said his thyroid was very low

normal.

> They are requesting that we have the tests redone about a month

> before his next appointment so that they can go over them with us.

> Anybody know what it could mean that his growth factors are so

high!

> or that his thyroid function is low! I have no idea what that

might

> do to his ability to get his GH. Anybody? Thanks for any insight!

> Blessings and Happy New Year to you all!

> Carmen, mom to Storm , 9y4m, 49.5 " , 55 lbs., and Paisley age 11.9

> going on 16!!! and 3 foster kids at the moment!