Genotropin (Growth Hormone Injections)

[ReneeP]

Hi Everyone...

I was wondering if anyone has been on Genotropin or have children who are/were on it. My daughter, Kaitlyn, is 11 1/2, perfectly normal for weight (over 50% on charts) but her height is behind (5-10%). Our CF doctor sent her to an endocrinologist (he works with several CF patients). He did testing to determine if she is not making growth hormone. The end result is that one test showed normal and the other showed a defiency. He said most insurances require both tests to show a defiency before it is covered but he wanted to see if he can get her started on it. Well, our insurance agreed to cover it but now I am skeptical. If it typically requires two positive tests and she only has one, does she really need it? It means a shot every single day and then the risk of side effects. Also, I read on their website that it can cause death in people with respiratory problems (I take that lightly because I know all drugs run a risk but still, it scares me). I don't think she is all that small for her age. She is not tall, but really she isn't all that short compared to her friends...The dr said that she should be growing at a rate of 4 inches per year and she is only growing 2 so she won't reach her full potential without help.

Any advice? If anyone has dealt with this drug, what are the side effects you noticed? How do you determine if it's worth the risk. The idea of the shots freaks Kaitlyn out. I give her sister allergy shots at home and Kaitlyn won't even be in the room when I do it. I have called our CF doctor to ask her opinion but of course I haven't gotten a response (nothing unusual)...so I figured I'd ask you guys. You always respond faster than the clinic.

Thanks!

 

[julie]

Renee, I don't know but Mark might have some insight into this question. When he gets home this afternoon I'll ask him to take a peek and see if he has any info for you.

 

[CFHockeyMom]

Renee,

Sean just finished up a study in the CF clinic regarding the benefits of growth hormone on CF patients. The thought is that the more they grow, the better the lung function they'll have. There's some science as to why they believe this but I've forgotten it. The study is 18 months long for each participant. Sean was the first in the study so we're waiting for the others to finish up before we get the official results but his Dr. said so far the results were very encouraging. Unfortunately, Sean was in the group that didn't receive the shots but based on the results so far, his Dr. will get him on the growth hormone as soon as the study is complete.

As an aside, we have a friend who was in a similar study with the growth hormone shots (not a CFer) and the results were very successful.

Anyway, here's what I know about the shots themselves. The needle is ever so tiny and is not like a typical shot. Sean's friend (also a 10 year old boy) had no trouble with them at all. Now he's probably not as sensitive to that kind of thing as Sean and Kaitlyn are but one of our CF nurses showed Sean the needle and he didn't think it looked all that bad.

When we originally entered the study we were provided a packet about the risks and potential side effects of the shots. The only one that sticks out in my memory is the risk of Leukemia. It's small and I think most growth hormones carry this risk.

Anyway, maybe mention the study to your Docs. You can PM me and I can get you Sean's Dr's contact info if you or your Dr's are interested in the study info/results.

 

[Markus]

from the research that I have done, GH can have great potential for people that have issues with gaining weight and people that are not reaching their height potential, but at the same time it can have some interesting side effects if taken over a long periods of time. For side effects, I have read over long periods of time it can cause people to have enlarged extremeties including hands, feet, enlarged forehead, (which are some of the minor things) but the more serious things include enlarged heart and organs which can obvious problems down the road. Additionally, if there is any cancer in the body it will make the cancer grow at a faster rate since GH helps the cell divide. These are all things to be considered when thinking about taking GH.

 

[Jane]

We also met with the endocrinologist in our clinic about Josh's growth (or lack of). She said she would be hesitant to start hormones on someone who is pre-pubescent. Apparently the hormones will make you grow rapidly, but then you stop. Your natural growth might take longer, but you may end up taller in the long run. She's going to re-evaluate again next year.

 

[ReneeP]

Thank you all for the info. It gives me more to work with and think about. I did hear back from the CF dr and she highly recommended that we go ahead with the shots. I am afraid to go online and do a search because I know there are bound to be things that would scare me to death. You can look up just about any drug and you will find horror stories that will freak you out...so rather than do that, I wanted to ask here, where I feel more comfortable. The nurse is supposed to be coming to my house on Sunday to give the first shot and train us on how to do them. I'm scared but I think we'll give it a shot ... Thanks again for the info.

 

[ReneeP]

Hi Jane..

I think we were posting at the same time cuz I didn't see yours until after I posted my response...

The endo did make sure she was already going through puberty before considering the shots...which she is. I didn't realize that was why until you just told me that, but it was something he was concerned about. It was very awkward in the office because he was asking Kaitlyn questions that were very uncomfortable for her (body hair, breast development, etc.) and I thought she was going to melt right into her chair and disappear. He said that if she weren't going through puberty yet, then he wouldn't start her on the shots because she may start growing on her own as soon as she hits puberty, but since she already has and still isn't growing, it shows that there is a problem.

I hope that makes sense. I am getting ready for work and I am still half asleep..

Thanks for the info.

 

[Jane]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ReneeP</b></i>

It was very awkward in the office because he was asking Kaitlyn questions that were very uncomfortable for her (body hair, breast development, etc.)

.</end quote></div>

LOL, try being there with TWO BOYS (my husband couldn't be at that appt). First the WOMAN doctor says I need to check your genitals, so I told them I wouldn't look. Then she asked them all the questions... hair, erections, ejaculation.<img src="i/expressions/face-icon-small-blush.gif" border="0">

THEN she asked ME all about MY development. When did you get your public hair, breast development, first period? I'm not sure Jesse (at the time) even had a clue about any of that. I couldn't even look at Josh. So weird.

 

[ReneeP]

Oh, Jane! I can just imagine what that was like for you. It was bad enough for me with my daughter (and yes, they asked me all those same questions...). I wasn't prepared for that visit at all. I wish someone had told me what to expect. As I am sure you do as well...

 

[CFTwins]

I'm wondering if anyone who posted on this last year is around and would give an update on how the growth hormone is going? Still using it? Is it still working? Side effects?

Also, anyone out there with a toddler on this? We're headed to the endocrinologist next month and I want to have the list of questions ready. We've just had hints from the Pulmonologist so far.

 

[CFTwins]

I'm wondering if anyone who posted on this last year is around and would give an update on how the growth hormone is going? Still using it? Is it still working? Side effects?

Also, anyone out there with a toddler on this? We're headed to the endocrinologist next month and I want to have the list of questions ready. We've just had hints from the Pulmonologist so far.

 

[CFTwins]

I'm wondering if anyone who posted on this last year is around and would give an update on how the growth hormone is going? Still using it? Is it still working? Side effects?

Also, anyone out there with a toddler on this? We're headed to the endocrinologist next month and I want to have the list of questions ready. We've just had hints from the Pulmonologist so far.

 

[CFTwins]

I'm wondering if anyone who posted on this last year is around and would give an update on how the growth hormone is going? Still using it? Is it still working? Side effects?

Also, anyone out there with a toddler on this? We're headed to the endocrinologist next month and I want to have the list of questions ready. We've just had hints from the Pulmonologist so far.

 

[CFTwins]

I'm wondering if anyone who posted on this last year is around and would give an update on how the growth hormone is going? Still using it? Is it still working? Side effects?

Also, anyone out there with a toddler on this? We're headed to the endocrinologist next month and I want to have the list of questions ready. We've just had hints from the Pulmonologist so far.

 

[luvluvluv]

my son has been taking the growth hormone shot since last october. he had just turned 13 but his physical developement was that of an 11 year old. he was always extremely thin and short. since taking the shots he has filled out some, nothing dramatic but he doesn't have that sunken boney look about him anymore. other than that we have seen no other improvements at this time. he will be taking the shots for 4 years. they told us it may take 6 mos-1 year before we might see any real growth. i am curious as to how others are doing w/gh shot

 

[luvluvluv]

my son has been taking the growth hormone shot since last october. he had just turned 13 but his physical developement was that of an 11 year old. he was always extremely thin and short. since taking the shots he has filled out some, nothing dramatic but he doesn't have that sunken boney look about him anymore. other than that we have seen no other improvements at this time. he will be taking the shots for 4 years. they told us it may take 6 mos-1 year before we might see any real growth. i am curious as to how others are doing w/gh shot

 

[luvluvluv]

my son has been taking the growth hormone shot since last october. he had just turned 13 but his physical developement was that of an 11 year old. he was always extremely thin and short. since taking the shots he has filled out some, nothing dramatic but he doesn't have that sunken boney look about him anymore. other than that we have seen no other improvements at this time. he will be taking the shots for 4 years. they told us it may take 6 mos-1 year before we might see any real growth. i am curious as to how others are doing w/gh shot

 

[luvluvluv]

my son has been taking the growth hormone shot since last october. he had just turned 13 but his physical developement was that of an 11 year old. he was always extremely thin and short. since taking the shots he has filled out some, nothing dramatic but he doesn't have that sunken boney look about him anymore. other than that we have seen no other improvements at this time. he will be taking the shots for 4 years. they told us it may take 6 mos-1 year before we might see any real growth. i am curious as to how others are doing w/gh shot

 

[luvluvluv]

my son has been taking the growth hormone shot since last october. he had just turned 13 but his physical developement was that of an 11 year old. he was always extremely thin and short. since taking the shots he has filled out some, nothing dramatic but he doesn't have that sunken boney look about him anymore. other than that we have seen no other improvements at this time. he will be taking the shots for 4 years. they told us it may take 6 mos-1 year before we might see any real growth. i am curious as to how others are doing w/gh shot

 

[ReneeP]

I am the original poster of this... My daugther did end up going on Genotropin. She was on it for a total of 8 months. She grew very little, though every little bit helps. Now, I don't want to scare anyone or discourage the use of growth hormones, but after reading your post, I feel obligated to tell you that we had a very serious and very severe side effect to the Gentotropin. I actually posted about it when it happened. I don't know how to link you to that post, but if you search you will be able to find it. The title was:

Papilledema-related to growth hormone injections and it was started by me... if you want to read it and have trouble finding it, let me know and I'll just copy and paste it.

At the time of me posting that we were not positive if it was related to the Gentropin or not, but as it turned out, it was. And Kaitlyn is doing fine now, though she is still being seen by a neurologist and an opthomologist and is still on medication... This will make more sense after you read the other post...

I hope I don't discourage you from anything that will help your children. I'm sure that what happened to Kaitlyn was rare... still, you asked about side effects and I feel that I should mention it just incase.