My daughter is going to see an endocrinologist next week to dicuss the possiblity of growth hormone therapy. Jacklyn was a 26 weeker , 1 lb. 7 oz. 12 inches. She just had her 4 year check up and was 28 lbs. and 36 inches. Her BMI is fine but she is below 3rd percentile on height which is where the concern is.
My younger half-brother has an underdeveloped pituitary gland and started growth hormones when he was 4 and he has to take them for the rest of his life. He is now 24 years old and is 6 ft. 2 in. so the hormones did their job. But to me, he is kind of odd looking and I don't know if that's from the hormones or if he would have been odd looking anyway.
I'm just wondering if there are any preemie parents out there that have done this or decided aganst it and what your experiences have been with it?
If her growth continues on this curve, she is estimated to reach only 4 ft. 10 in. by adulthood. To me, that is too small. I don't want her to have to struggle with everyday things or have difficu;ty being taken seriously in her adult life. Any input is appreciated. Thanks.
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Growth hormone experience/opinions?
- By laurakennedy77
- Posted November 3, 2009 at 9:53 pm · 14 replies
- In Growing up and education
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- By Babymatt
- Posted November 4, 2009 at 10:52 am
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What a difficult decision. I believe that once you start hormones, they are difficult to stop because your body tells you not to make more because there is enough. On the other hand, it would be hard to be 4.10. My SIL is only 4'11" and I think it has been rough on her. When she was young they thought about hormones but decided against it because they are Chinese and most of the women are only 5'2" in her family. She is still more than 2 standard deviations off her estimated potential height and I can say it has been hard on her inspite of being part of a culture that really appreciates petite women.
- By Bklynmom
- Posted November 4, 2009 at 12:43 pm
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Do the growth curves account for growth spurts? I thought a lot of people did much of their growing over a period of a few years- at least that's what happened with my husband. Also- isn't there any way they can test your daughter's levels of growth hormone in her blood? I would want to do that before starting a potentially life-long treatment. My daughter is pretty small, I worry about her being short in the future, too.
- By laurakennedy77
- Posted November 4, 2009 at 6:07 pm
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She will have blood work and x-rays when we see the endocrinologist later this month. She has had bone age tests which is one of the things they looked at when projecting her adult height. I will definitely update after the tests are done.
- By M-and-D-Mommy
- Posted November 4, 2009 at 6:19 pm
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Don't have any advise to offer. I just wanted to wish you luck with this tough decision:)
- By SpeasHill
- Posted November 4, 2009 at 10:13 pm
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We'll probably be looking at the same questions in about a year, so I've been polling all the very petite women I know as I see them. I've probably asked 10 women who are just barely 5 feet tall or shorter, and not a single one of them said that they would have wanted to be taller if their parents had the option to treat them when they were younger. Now, these are all women 22+, and I'm sure their answers would have been different at least a some point, say, in adolescence, but now that they are adults, they are happy with their height (or lack thereof). Every single one also mentioned that she might think differently if she were male, since we have such a double-standard about short men. (It's sexist, but it's a very real issue for young men.)
So that's what I've learned so far, for what it's worth. I'm still not sure what we'll do; it probably depends on what her bone age tests show. So far, we've just been basing our projections on extrapolating from growth charts, which put her at 4'10" as well. I'd be interested to hear what you guys decide and why, when you get there.
Thanks, and good luck!
- By beckhamsmom
- Posted November 5, 2009 at 12:04 am
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Hi all. I am 5'1" and can reiterize what SpeasHill says. Yes, there were times in life that I wish I were a bit taller, but overall I am happy with my size and feel I have good proportions. However, if the Dr. feels there is a medical need for HGH, I would be at least interested in learning more.
I too can relate to the small stature for our LO's. DS is and has been in the 3rd -5th percentile for his adjusted age since coming home from the NICU. He is almost 20 months / 17 months. I haveconcerns about his future height. I feel that if my DS stays in this percentile, he will face more challenges than I did. I think it is harder for boys of small stature. DH is 5'11" so prior to DS premature arrival we were hoping our son would reach a height of 5'8"ish. Not sure what the future holds.
Good luck!
- By Bellasmom1
- Posted November 5, 2009 at 12:29 am
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My DD is 3 1/2 and her doctor has also talked to us about the possibility of growth hormones. It is a very hard decision but my husband and I decided against it. I myself am only 5'1 and my husband is on the small side also and we just felt that our DD will be who she is going to be. We talked to many people in our family that all gave us stories of other family members that were small or tiny and the doctors were concerned but when the hit a certain age they finally grew to a good height. My Grandma's youngest brother was a very small kid and his parents had him to different doctos to see what was wrong. This was before hormone growth therapy so that wasn't an option. When he hit his early teen years he all of a sudden shot up in height and was the tallest kid in their family of 8. He is the tallest, I know because I see him every year at our family reunion lol. I hope my DD is happy with her height when she gets older. I just think with our genetics and our families genetics I feel this is the right answer for our child.
- By Bellasmom1
- Posted November 5, 2009 at 12:31 am
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Oh I forgot to add my little one will be 4 y/o in February and she is a pound or 2 lighter than your DD and an inch shorter.
- By TampaTheresa
- Posted November 5, 2009 at 8:57 am
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Please keep us posted. I can totally relate and I know this is something we are going to have to look into in a year or so. My son is IUGR and has always tracked right at the 3rd% on the growth chart for height. I also worry how short stature will affect him in the future as a male. I do not want it to put any limitations on him or cause him to feel inferior to his peers.
My BIL has always been shorter than most of his peers-around 5'6"ish. When I asked him about it, he stated that it has made some things more difficult and wishes he were taller (if GH were an option for him). It bothered him the most in high school, dating (girls want a taller man), job interviews, etc. There is a double-standard unfortunately.
- By supermom
- Posted November 5, 2009 at 11:51 am
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my twins are on GH therapy (have been for 2 years) and they have gorwn ONLY 12 inches.
About your brother, pituitary gland dissorders make for "funny looking" build, I know because I have seen a lot going to the endo for my endo dissorder (thyroid)
Anyways, docs told me "the kids were growing" so there was no need to evaluate a GH deficiency, but at age 2 they were the size of a 9 month old, so we did the blood test and it cme back that they had a severe deficiency of IGF, so they have been on therapy ever since.
I can talk forever about this, we've been through many docs, specialties and arguments, i am tired, I want my kids to grow healthy and be like their peers.
ALL THAT SAID, I WOULD GO WITH GH THERAPY ANY TIME, it is easy to dispense and the twins are much better now that they can climb in the park and throw balls.
good luck
- By supermom
- Posted November 5, 2009 at 11:54 am
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about short parents and they babies stature:
the GH will NOT make your kids taller than they are genetically "suppossed" to be, it will maximize their growth range, but will not make them extra tall, (otherwise, imagine... we would have 10 feet tall people!!)
what it will do is boost the child's growth to catch up with the rest of hte kids, will "accelerate" the process, not make it bigger.
The stature gene comes from MOM.
- By awood
- Posted November 5, 2009 at 12:18 pm
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My son, who was a 26 weeker, is 4 years old and has been on GH Therapy for over a year now. My son is deficient in Antidiuretic Hormone and they say that it is very common to be deficient in another. So, after lots of testing, we found that he was truly GH deficient. He produces some on his own, just not quite enough. Supermom is right, they will not grow any taller than they are genetically supposed to. He has really thrived on the shots. He is growing at a rate of 93% where he was barely 3% prior to the shots. We go to the Endocrinologist every 6 months to check his growth and see if adjustments need to be made to his dose. They said it is likely that he will be on the shots until he is 17 but there are kids that come off of it before. They will not know until he is older if he will need it as an adult.
OVERALL -- We are VERY pleased and would do it all over again:).
Good luck with your decision. I remember being where you were at one time. The thing that made me feel better was that the test VALIDATED that we were truly growth hormone deficient and I wasn't putting him on the therapy simply b/c he was small. Not to say we wouldn't have done it.....we just may have waited a little bit longer to see if he could catch up on his own.
- By BrandonsMummy
- Posted November 5, 2009 at 12:19 pm
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Hmm, that is interesting. My DD was 28 lbs and 37 ins (she was a 4 lb 5 oz 16 in 33 weeker) at 4 years old. No one has ever mentioned growth hormone therapy. She is now 4 yrs 8.5 months old and weighs 30 pounds and is about 38.5 ins tall with the help of PediaSure. Her doctor keeps assuring us that if we just make sure she gets all the calories she needs (hence the PediaSure) she will catch up, probably when she goes through puberty. Im a normal height for a woman; 5 ft 6.5 ins but Im underweight at 105 pounds as the mother of 4 kids so she may just be like me, who knows. DH is 6 ft even and 200 lbs so we think she will catch up.
Our oldest DD is 20% weight and height (she is 10 years old, a former 5 lb 6 oz 17 in 35 weeker) and our older DS is 70% height and 10% weight (he is a former 6 lb 8 oz 18.5 in 35.5 weeker) so he is built like me. Our baby is 2 years old; he was 23 lb 13 oz and 32 ins at his 2 year check up (he is a former 3 lb 13 oz 15 in 32 weeker.) No one has ever mentioned growth hormone therapy for any of them, and they were all tiny through their first years.
Good luck in your decision :)
- By awood
- Posted November 5, 2009 at 5:56 pm
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Our situation was a bit different. My son has Diabetes Insipidus. Which is the water diabetes and is from a lack of ADH which the pituitary produces. We have seen a Endocrinologist from the time we came home from the NICU (when he was 3.5 mths old). He also had delayed gastric emptying and reflux. With the pituitary already showing a deficiency in one area....they checked that area as well since he could never get on the growth charts. So our situation is a bit different on how we actually came to be on the GH. He gets shots 6 days a week.
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