AimeeM Posted June 7, 2014 Share Posted June 7, 2014 We received the results of Nico's latest blood work, skeletal survey, and bone age, ordered by his Endocrinologist. All looks good on that end. We do know that he'll want to refer out to a geneticist, because he wants to be sure that the growth issues, combined with his congenital heart/lung/vascular defects aren't syndrome related? It was mentioned at our last appointment, before the tests were performed. In the mean time, however, our pediatrician has mentioned that he is the necessary number of standard deviations below where his growth should be, and I believe it was his Endo who mentioned that his projected/estimated adult height was so far below the "norm", and it has been mentioned that he would be eligible for growth hormone therapy? Of course, this is provided that everything clears with a geneticist, I would imagine, and that we learn the growth problems and congenital defects aren't related by a syndrome, etc. Has anybody had experience with growth hormones and children? What are we looking at, should we decide to proceed with them? Quote Link to comment Share on other sites More sharing options...
AimeeM Posted June 7, 2014 Author Share Posted June 7, 2014 I don't, but I'm curious as to what the necessary number of standard deviations below is. Do you know? She (regular pediatrician) said he needed to be at least *two* standard deviations below "normal". I haven't asked the endo to specify, though, and I'm just assuming here that the pediatrician is accurate. Quote Link to comment Share on other sites More sharing options...
Alice Posted June 7, 2014 Share Posted June 7, 2014 It's 2.25 standard deviations below the mean for age, which translates to less than the 1.2 percentile. The recommendation is also that the child has a growth velocity suggesting that ultimate adult height will be below that point also, which typically is translated as meaning a height of 5'3" for men and 4'11" for women. It's important to realize those guidelines aren't saying that kids who have a predicted adult height in that range SHOULD have HGH, just that it is approved for them even if there is no documented growth hormone deficiency. GH is very expensive (estimated in the $25-50K range for the full treatment) and it used to be that insurance companies would only pay if there was a documented GH deficiency. By approving it and recommending it for kids who have idiopathic short stature (height in the above range but no GH deficiency) it is more likely but not guaranteed that insurance will cover a larger part of the treatment. I have a couple of patients on GH therapy. They all have documented GH deficiency. Most have experienced some bone pain and aches with their injections. One had a lot of pain with one brand of GH but his endo. suspected it was the carrier in the injection and switched brands and he has been ok with it. There are other theoretical risks, mostly that it may increase the risk of diabetes and some cancers. Quote Link to comment Share on other sites More sharing options...
AimeeM Posted June 7, 2014 Author Share Posted June 7, 2014 I just ask because one of mine is way off the charts (under height). But so was I. So was my dad. I mean it's not surprising. Although my husband is 5 ft 11 (so pretty average). I don't feel compelled that it's extreme enough though to do anything about it. Is this the 1 year old or the 5 year old? I'm kind of under-height (5' 1"; standard for women in my family). My husband is only 5' 3", though, and his own parents were between 4' 10-ish and 5' 1". We know we're short stock :) My 5 year old... he's about 30 lbs (a bit less) and the average height of a 2 year old. Growth hormones weren't an option for my husband, and I believe it's rather recent that they're offered for just "short" (as opposed to actual medical reasons). I'm pretty sure I was told that it's only been available to "just very small children" very recently. Quote Link to comment Share on other sites More sharing options...
AimeeM Posted June 7, 2014 Author Share Posted June 7, 2014 It's 2.25 standard deviations below the mean for age, which translates to less than the 1.2 percentile. The recommendation is also that the child has a growth velocity suggesting that ultimate adult height will be below that point also, which typically is translated as meaning a height of 5'3" for men and 4'11" for women. It's important to realize those guidelines aren't saying that kids who have a predicted adult height in that range SHOULD have HGH, just that it is approved for them even if there is no documented growth hormone deficiency. GH is very expensive (estimated in the $25-50K range for the full treatment) and it used to be that insurance companies would only pay if there was a documented GH deficiency. By approving it and recommending it for kids who have idiopathic short stature (height in the above range but no GH deficiency) it is more likely but not guaranteed that insurance will cover a larger part of the treatment. I have a couple of patients on GH therapy. They all have documented GH deficiency. Most have experienced some bone pain and aches with their injections. One had a lot of pain with one brand of GH but his endo. suspected it was the carrier in the injection and switched brands and he has been ok with it. There are other theoretical risks, mostly that it may increase the risk of diabetes and some cancers. What does "theoretical risks" mean? Are these risks proven? Prevalent? I am a bit concerned that my husband's own GP told my husband that they opted NOT to get the shots for their own son, largely because of how painful they can be. Quote Link to comment Share on other sites More sharing options...
73349 Posted June 7, 2014 Share Posted June 7, 2014 A friend's son used them at age 4. Mom and Dad are not short; kiddo had had therapy for feeding issues but was still tiny (both height and weight). With several months of use, he grew enough to be merely on the smallish side of average, and I think they stopped. He did not have a problem with pain AFAIK. It does disqualify you from ever giving blood, but I'm not aware of any other side effects. Quote Link to comment Share on other sites More sharing options...
Nemom Posted June 7, 2014 Share Posted June 7, 2014 I do not personally have experience but I have two friends who have had children on them. First friend had her daughter on the shots for about 10 years. She is now over 5 feet tall and has three kids of her own. Two of her own children now take the shots. None of them have had any long term bad side effects. All kids did/are doing well. Second friend's daughter has been on them for about 5 years roughly. She is still really tiny and thin for her age. I personally think the daughter has other health issues that have not been explored by the parents. Docs have retested and just can't figure out why she is not growing and gaining like she should be. It's complicated... Quote Link to comment Share on other sites More sharing options...
PinkyandtheBrains. Posted June 7, 2014 Share Posted June 7, 2014 I have a nephew who gets growth hormone because he doesn't grow. He has to to live. When discussing if it were an option with our small son, while waiting on various test results, we decided that we would likely not use the growth hormone just to make him hit normal height. It turns out he just has a growth delay that will make him a late bloomer but should hit at least avg height. Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted June 8, 2014 Share Posted June 8, 2014 DS is short, but does not have a GH deficiency. I talked to our old pediatrician about it, and she said that while she could refer us to an endocrinologist, she felt that the increased cancer risk was not worth gaining an inch or two of height as an adult. She said that she does recommend the shots for kids with a documented deficiency but otherwise she discourages it. ETA: Here is an article on the risks of HGH: http://www.pcrm.org/research/resch/reschethics/protecting-children-from-human-growth-hormone Quote Link to comment Share on other sites More sharing options...
jhschool Posted June 8, 2014 Share Posted June 8, 2014 I know nothing about it except a very short boy in high school got them and in college he was super tall. He didn't seem to have any side effects. He was very good looking, had perfect skin, and teeth that were so beautiful--he had no cavities at all. (Yes, he was good looking! Before and after his shots.) Quote Link to comment Share on other sites More sharing options...
Mrs Mungo Posted June 8, 2014 Share Posted June 8, 2014 I will PM you. Quote Link to comment Share on other sites More sharing options...
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