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Old 08-11-2011, 11:50 AM   #1
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growth hormone diffeciency...anyone have a daughter with this?

I will try to make this short, as it has been a very long process! This past December at my daughters 9 month apt we saw a new doctor(ours was out sick). We loved him and I mentioned at the begining of the apt that I was concerned about her lack of growth. (I can't remember what she was then, but now she is only 16 pounds now). I always mention this at apts, as she is so small. He was also concerned and ran some blood tests to see what was going on. The next day I got a call from the head pediatrician at the office telling me that the tests came back that there were some "huge" (his words) issues and that she may have osteosarcome and he made us an apt to see an endocrinologist and an oncologist for the next day! We went to the specialists, ruled out cancer, was told it was either a liver issue or Ricketts. Later those were both ruled out and in the end it came out that she has a growth hormone diffenciency. We recently moved and are trying to decide if we should do the hormone shots for her to help her grow or not. No one yet has been able to tell me what will happen either way-if we do them or not do them. She has gotten a little taller, but still wears 3-6 month clothes and is just 16 pounds at alomost 18 months! My question to anyone who has a child with this is what did you decide and why?

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Old 08-11-2011, 12:29 PM   #2
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Re: growth hormone diffeciency...anyone have a daughter with this?

My oldest has growth hormone deficiency though not a girl. We didn't get it diagnosed until he was 4, almost 5 because he had other health issues that we thought might be slowing his growth. At a year old he was the same size as you mention your daughter is now. At age 4 he was the size of an 18m-2yr old. I think growth hormones get a bad rap because they used to be prescribed just to get people to grow taller than they would have otherwise, when it really wasn't needed. But in my experience(which granted is only two endocrinologists so far) they won't just prescribe them nowadays if they really aren't needed. In fact my son has a friend in his fencing class that's really tiny and she's been seen on an ongoing basis by an endocrinologist. However since there is no growth hormone deficiency and she is growing(albeit slowly, though not as slow as my son was before the hormones) he has never suggested hormone therapy to her mom, just a wait and see approach.

My son is now 9, almost 10 years old and is at the 40% in height. If we hadn't done the growth hormones I'm positive he wouldn't be anywhere near a normal height. When we started the growth hormones he was about 50% BELOW the growth charts. If you really are unsure get a second opinion from another endocrinologist but imo for true growth hormone deficiency they are needed.
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Old 08-11-2011, 12:54 PM   #3
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Re: growth hormone diffeciency...anyone have a daughter with this?

My bestfriend took growth hormones in middle school. She was and is still absolutely tiny. She is almost 26, 4' 10" and 80lbs soaking wet but she actually looks normal as far as her height compared to her weight goes. I can only imagine how tiny she would have been had they not done the hormones. I don't know much about it but just wanted to toss that in. My friends little boy is 13 months and only 14lbs so I may mention this to her also.
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Old 08-11-2011, 01:31 PM   #4
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Re: growth hormone diffeciency...anyone have a daughter with this?

My oldest may or may not have a growth hormone deffiency. Right now we don't know. From all of his blood work he seems to have enough of his hormones but he is not growing (under 2 inches a year which is the cut off they like to see at his age). His bones are also way behind which is actually a good sign strangely enough. Because his bones are ageing more slowly it may mean that he is just a "late bloomer" and will eventually hit puberty and grow late, which is fine with me especially with him being ASD. The issue is whether he will grow or not, and he is 10 now so the heat is on as they say. If we don't do something soon he may never reach his full height potential because we acted too late. The question is if he is actually producing enough hormone and if something is blocking him from using it adequately. Like WendyLady said Pediatric endocrinologists are good about taking a wait and see approach. We have been waiting and watching for several years now, taking blood work and x-rays every 6months. At first I thought I was dead set against hormone therapy because I thought he wasn't ready and we were jumping the gun, now I'm not so sure. He is showing more and more signs of puberty and I worry that if we don't do something soon we will be too late for him.
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Old 08-11-2011, 01:44 PM   #5
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Re: growth hormone diffeciency...anyone have a daughter with this?

I actually took it myself as a child. I virtually stopped growing by age 2. I went through a huge amount of testing and the diagnosis was growth hormone deficiency. I was started on it by around age 6 or 7. I won't lie. It's not fun. It bruises you all over. And eats away all your fat. SO you end up injecting it into pure muscle. I learned to give myself the shots eventually... which helped. But I still remember nights when I was 9- 10ish just crying and crying because I couldn't find an injection site that wasn't already bruised. That being said, I am sooooo grateful. I'm very small still for my family (I'm 5'1'' and the closest in height to me is 5'8'') but I'm within the normal height range for a woman (and actually close to average now that I live in Argentina). If my child receives the same diagnosis, I won't hesitate to start treatment. Also, I stopped treatment at 12 because I hit puberty. And also... my parents always gave me the option to stop once I was old enough. But I wanted to keep growing, so I chose to continue. If you have any questions, feel free to ask!
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