Re: ?'s for experts re: Lupron, GH

[Guest guest]

Hi Cindy

My son, Adam, will be 13 in October. We started GH when he was 8. He is

absolutely no where near puberty. So I would have to say, no, being on GH

doesn't bring about early puberty. I even know of a girl who's son was

growth hormone deficient, and he was on GH but still no puberty; so they

decided to give him testosterone because at the age of 13 his self esteem

was taking a bigger hit from not being " like " the other boys; much worse

than being smaller.

I may be going that route as well in the near future. I will have to see.

As to the question of doing GH for a limited time. It's a good question; I'm

not sure of the answer. When we were discussing growth hormone; I was

guaranteed Adam would never reach 5 feet. But once we started, this past

year, the doctor has now guaranteed me we will definitely hit the 5 feet

mark now and any growth after that will be a bonus. So on the GH he has

grown more; if I were to stop it now, I wouldn't loose what we have gained

but I'm sure his growth would slow right back down again. He's 4'7 " right

now, so I am guessing but suppose I stopped today; he might reach 5 feet on

his own; but with the GH for the next 3 or 4 more years?? Maybe I could get

6 inches (instead of 3) and get him to 5'3 " ??

For me, I think Adam needs as much height as he can get. It has become an

incredibly upsetting issue for him in regards to his self esteem. I am

surprised to be at this point because 4 or5 years ago he couldn't care less.

It did not bother him at all.

Finally, I will tell you what was the final point for me to decide to go

with GH. Like you, I had serious reservations. But my endo told me that

within 6 months they would know, based on the growth curve, if it was

helping Adam or not. That was the deciding factor. I was worried that I

would put him through these nightly needles for 8 years and find out at the

end that he only got an extra inch or something (which wouldn't have been

worth it in my book). But for us, even after 3 months, his growth curve

spiked up and I knew I had made the right decision.

Even now, I know I have gotten Adam (even at this point) about 6 more inches

that he would have had. Realistically, the doctor said he would more than

likely be 4'7 " as a adult left to grow on his own without GH. To see him at

that size NOW and think " that could have been it for him " just has me down

on my hands and knees thanking everyone for the fact that we have this

stuff!!

It's a tough decision, but if you are not sure, just do a trial for a few

months and see what kind of difference it makes.

Debby

[Guest guest]

Cindy - I think what Dr. H meant was the reason you would put a

child on Lupron to postpone puberty (talking about an RSS/SGA child,

not a 2 year old experiencing precocious puberty) is to maximize

growing time, to get your child even taller. And if you have

decided against growth hormone, believing that your child is just

fine with their shorter stature, then why would you then decide to

use Lupron? Especially since compared to Lupron, GH is a walk in

the park. I hope that makes sense.

I don't have time to go through the entire GH discussion here, but I

am sure that you sat through Chernausek's presentation on GH at the

convention, right? THe benefits for our children on GH are far more

than just height, remember. The tumor situation, if you recall from

the discussion, is so absolutely remote and such an infintesimelly

(spelling?) remote chance -- the physicians were explaining that few

drugs have more testing hours than rGH. However, it is a 1 in

zillion risk, so we have to be aware of it. However, the risk is

when a child's free IGF-1 levels are way sky high above normal, and

stay this way for several years. This is why they test the child's

IGF-1 levels. But these levels are tested once a year, along with a

bunch of other levels. If your endocrinologist follows your child

every 3 months, and does the annual bloodwork, then the risk should

be almost zero. Because if for some reason your child's IGF-1

levels were too high, they would make dose adjustements and if the

level stayed too high, then you would discontinue GH. I hope I am

making sense.

I would recommend reading the last MAGIC newsletter, which goes

through a discussion of GH and puberty (no, it does not cause

puberty to occur any earlier).

I would also recommend that you read through the library log that we

included in your convention handouts (also can get through MAGIC)

which lists 115 different medical articles. In the last column of

the log, Katy and I have typed up a summary of what each article is

about -- if it is a study, we list the specifics and results of the

study.

You can easily find the different medical studies on GH and RSS/SGA

children, see what year they were published and read the results.

You can also order the articles from MAGIC free and read them in

their entirety.

I would also recommend getting the DVD of Chernausek's presentation

on GH and studies when it comes out again, and listen to it again.

Hearing things multiple times help.

Remember that our RSS/SGA children, compared to " normal " children,

have:

* higher blood pressure

* higher lipid levels (cholesterol)

* lower body mass and higher body fat

* lower bone density

Growth hormone has been found to normalize ALL of the above, and

those " normal " levels have been found to stay this way after the

discontinuation of growth hormone.

The risk of tumors is so absolutely remote. However, there is one

side effect that SHOULD be considered, and carefully evaluated by

parents. And Chernausek talked about this. GH DOES increase the

fasting and glucose insulin levels of these kids during GHT. And

for kids who already run the risk of insulin resistance, we have to

determine what increased risk this puts them on. Studies have

found, thankfully, that these insulin levels RETURN to pre-treatment

levels within 6 months of discontinuing GHT. But parents should

make sure that the children eat healthy during GHT, and physicians

monitor the insulin levels on the annual bloodwork.

I would also encourage parents to discuss with their endo where the

child's midparental target height is, and where the child is

tracking currently. Determine the " difference " -- all of these have

to be weighed in deciding if and when to use GH.

Please contact MAGIC at 800-3MAGIC3 for all of the information I

discussed earlier -- the library log, articles, convention DVD or

VHS tapes, etc. I know this can be confusing, and I truly believe

that the more information a parent can arm themselves with, the

better you will be.

Salem

> Hi,

> Dr. H said at the convention that there's no reason to give Lupron

if

> your kid isn't taking GH. why is that? And, if they are on GH,

does

> that mean they will need Lupron for sure? Does GH cause puberty to

> happen sooner? What are the side effects of Lupron?

>

> A question about GH, I doubt anyone knows the answer to this, but,

do

> you think if we give him GH for say five years, would that be

better

> than not at all? I mean, would he gain some height from that or do

we

> have to give it for the long haul to gain anything?

>

> Me and my husband are having a very hard time deciding to do the

GH.

> Those unknown long-term side effects is what's getting to me, and

the

> fact that you have to monitor the IGF-1, I think, and something

else,

> don't have my notes right now, and if those levels are elevated,

they

> are at increased risk of tumors.

>

> Any input from others about making your decisions would be

appreciated.

>

> cindy

[Guest guest]

<<This is why they test the child's

IGF-1 levels. But these levels are tested once a year, along with a

bunch of other levels. If your endocrinologist follows your child

every 3 months, and does the annual bloodwork, then the risk should

be almost zero>>

Liam is non GHT and goes to the endo every three months, but he also has his

IGF, and other blood tests every 3 months as well..... I figured that was

normal.

Mom to Jed and Liam

Orlando Fl

Family and Breeding Website

[Guest guest]

Debby and Jeniffer,

Thanks for the responses.

Debby, has it been five years already? I clearly remember you telling

us about him hiding under the table in the doctors office!

I'm glad you mentioned about him caring about his height now because

n is so outgoing and kind of full of himself actually, he thinks

he's so cute, and he also says it doesn't matter that his friends are

taller, but of course that all could change in a few years.

, I've been meaning to check out those articles, thanks.

Cindy