Does anyone have experience with growth hormones?

[sesa70]

I have to admitt they scare me :(

My dd will be 7 in less than a month and she is just under 40" tall. She is very very small, has never a day in her life made the growth charts. Her height never used to matter much to me, but now I am noticing things like her not being able to reach the sink to wash her hands or get up on the toilet herself, etc. She is noticably smaller than everyone at school and most of the other kids mistake her for being much younger than she is, and it bothers her.

We have had blood testing and xrays done and there seems no known cause to her short stature. The issue isn't only her total height but her growth rate which is very slow. Her endocrinologist is thinking of putting her on growth hormones, but I have so many mixed feelings. If she reached around 5ft as an adult I would have no issue, but at this point we have no idea if she'll even make it close to that. She's growing about an inch per year, so she won't even make 4ft adult height at this rate.

I do'nt know what the right answer is, and I don't know what to do. Anyone btdt? Advice?

[chiefmir]

My DH is 5' 6" tall, so on the short side for an adult male, but definitely "normal", or whatever that is.  He's been on growth hormone since he was 4 years old, with a brief pause in there, when there was a shift from actual HUMAN growth hormone to synthetic.  It has been amazing for him. Instead of  being likely well under 4 feet tall (he was the size of a 2 year old in kindergarten) he is of reasonably typical height.  Even more importantly, he has stayed on it at a tiny dose as an adult ( he's 41) because of the known protective properties for cardio health, etc.  I think it is 100% positive for him, both physically and psychologically.

[sesa70]

Thank you! One of my biggest worries is making the commitment because it is likely a life long one for her. She doesn't have any other issues, she is a very bright typical almost 7 year old in every other way. Did your husband have any side effects? Any issues in childhood?

ETA: Another concern of mine is that she doesn't have a growth hormone deficiency. She's just really small. All of her testing has come back normal.

[34me]

My niece received a diagnosis of constitutional growth delay when she was about 5. She was a little baby that few on her own curve and then fell a behind around 2. She also had no explanation as all tests came back "normal". When she was about 13 he bone age was almost even with her chronological age and she was still tiny. So they started GH. She was on it for 2 years (her choice) and at 17 has grown to 4'10" ish. Still shorter that average but she can do most things and use most common objects those of average stature can. She may not have been able to otherwise - she weighed 23lbs when she entered kindergarten.

She had no side effects, other than to her families' pocketbook.

[sesa70]

34me your niece sounds like my daughter. It was almost the same for her... she followed her own curve until about 2yrs old then fell behind and her growth was really slow after that. My daughters bone age is the same as her chronological age as well. Did she start growth hormone when she was 13? Our endo made it sound like the sooner she starts the better, but I would much prefer to wait a few years. I don't really care about height in terms of asthetics, I am just worried about her experiences in the world (not being able to drive, reach objects, etc). At 3'4 and 3 weeks away from being 7 I am not sure how much catch up time she has. I made another follow up appt for the endo this week, so I want to ask more questions.

[34me]

My sister had her head stuck in the sand for a long time. D probably should have started much earlier. She was put on Lupron first to delay puberty and try and get some growth that way( she would just grow for a longer period of time) but while she got more in that year than she would have she was still slated to be pretty little. So that's why she started GH then. Yes, she only did it for a finite amount of time, just the 2 years. She's been off it now for around 2 years. She doesn't seem to have any side effects of being off of it.

Get in touch with The Magic Foundation.They are really knowledgeable about GH and any growth disorder, even idiopathic short stature which is ultimately what D's dx was.

[askew]

My friend has a daughter with Turner's Syndrome- and while they don't have a growth hormone deficiency they are usually under 5'. Her daughter has been on GH since 15 months and at 6 is tall like the rest of her family. No side effects, and she does her own injections now- so she has control over it. 

[fizgig]

I have no real opinion on this but I can tell you two experiences I have had recently that apply. 

First, my DH is 5'9" now but when he left for college at 18, he was 4'10".  He hit puberty at 18 and, during his first year of college, grew over a foot (very painful!).  He said that he was glad it happened on his own and so, was happy they never did hormones.  But if he hadn't grown he thinks he would feel very differently. 

Our baby sitter right now is 4'11" and she said she is glad her parents didn't do the hormones.  I haven't asked why, but she did very specifically say she was happy not to have them.  I can ask why this friday when I see her.

Not sure if that helps - if I were you I think I would specifically seek out adults who did or didn't have growth hormones themselves and see what they think?

[sesa70]

Originally Posted by fizgig 

Not sure if that helps - if I were you I think I would specifically seek out adults who did or didn't have growth hormones themselves and see what they think?

I definately think this is a good idea.. .except my concern is that my daughter won't even make the 4"11 mark. She'll possibly hit 51" which would be 4'3... I worry about how she'll manage to do things like drive a car. But at the same time I am very hessitant to start growth hormone. I am just not sure what to do!

[Kerttu]

My son was 4 years and 5 months when bone age was 2 years and 8 months. Here in Finland endocrinology said it's nothing what I have to worried, but I'm worried every day, because He is boy and almost head shorter than other boys. So no for GH. Even blood test said: my son have low GH.

But what you think, is it bad if bone age is younger than chronological age?

[sesa70]

well, my daughters endo basically said that her projected adult height would be 4'8-4'9 without intervention, and with growth hormone she would get to about five feet. She also said that insurance would not cover it for idiopathic short stature... so we could do more testing and hope for favorable results or leave it as it is. I am going to take a little while to think about it since she said we could wait a year or two to start.

[KatWrangler]

We are having a follow up appointment with my son's Endo next week.  When we did the blood work and x-ray back in May.  Eventhough he is 8, the x-ray showed him to be between age 5 and 5 1/2.  His IGe level was on the very low end of normal.  The Endo said we will watch it and then go from there.
 

[Alison's Mom]

My dd just turned 8 and is 44 inches, so much shorter than her peers, even the next shortest child, and is the average height of probably a 4 or 5 yr old. She was normal ht/wt at birth and started to fall off the curve at 12-24 months. She now grows about 2.5 inches a year which is within the normal range, but she isn't catching up to the normal height. Both DH and I are short, but in the functional range, and I'm worried that it seems she won't even reach my 4'11 height. I worry about the same things as you: functioning as an independent adult, driving, plus social things like being able to fit into adult clothes, dating relationships, etc. We were referred to an Endo who tested her on a bunch of things, and tracked her height/weight for two years now and can't see any reason, but did say her bone age was about 1yr behind chrono age, which was good news. He said checking GH was actually a fairly invasive procedure, as it had to be checked several times throughout the day, especially at night while the child was asleep. He also said that in cases where it wasn't a GH disorder causing the problem, it would maybe give an extra 2inches in height, and was that worth 20k in cost and many many injections? We go back to him in a couple weeks and because she's been growing this past year as she has been for the two yrs previous, I'm sure he will not advise GH treatment. I'm interested in hearing what you end up doing, though, OP.

[KatWrangler]

We did the STIM test on Tuesday.  I believe it takes 1 to 2 weeks for the results.  Oh and my son actually lost a pound in the two weeks since he saw the Doctor.
 

[sesa70]

Alison's mom, our endo told us pretty much exactly what yours did. At this point I am taking a step back and watching her for a bit because I don't really think there is much more we can do at this point.

[Alison's Mom]

I'll post back if anything comes out of our Endo appt in a couple of weeks. I would love for her to reach 4'10 or 11.

[KatWrangler]

The STIM test only takes a couple of hours.   We went in at 8, they placed the IV and made numerous blood draws over a couple of hours.  We were done at 11:50am.

[Alison's Mom]

I'm not sure what STIM is, or whether this is the test our Endo was referring to, but because he talked about needing to test levels of GH while the child was asleep, I have a feeling it's a different test. I will ask when we are there later this week.

[KatWrangler]

They put something in the IV which tricks the body into releasing growth hormone.  That is why he doesn't have to be asleep during the test.
 

[Alison's Mom]

Good to know, Kat. I will ask about this.