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mmrkar
member
Growth Hormone Deficiency anyone?
mmrkar
member
I'm lurking a little. My son is small for his age and hasn't been growing much since his 9 month appointment - now 14 months. The doctor had us do a bone age test. We are waiting on the results, but she told us that he may have a growth horomone deficiency. She said it is fairly common, but as a mom, I'm freaking out a little.
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Re: Growth Hormone Deficiency anyone?
Hi,
My son has hypothyroidism. He's 2, and takes synthroid. The thyroid (not HGH) controls growth until age 3 or so. I assume his thyroid levels have been checked?
My oldest DD (see the one holding my 18mth old in my siggy) who is 11 is very tiny. She was always 98th percentile until 18 months and she stopped growing for a year and a half. She actually takes after me (I'm 4'11) and that's is what I assumed it was when she stopped growing. We did a bone age test at around 4. It showed her growth plates to be a year behind. At that point, we did hormone and chromosomal testing and all came back normal. We did repeat bone ages up until age 9. At age 9, her growth plates were 2 years behind and we were referred to an endocrinologist who did repeat hormone and chromosomal testing. Her results came back normal again, however since they estimated her to be extremely short (4'9" based on their calculations) she qualifies for growth hormone injections. Typically they "test" growth hormones to see if the child will even respond to them (according to our endo). However, since she was not deficient, it was our decision according to the endo. We decided not to go with treatment. Since that time our pedi still tries to get us to go back to the endo even trying to ask me about how DD feels in front of her and is that how she will feel at age 16 when it's too late. DD is fine with her height. She has told the pedi that herself. I still think she will grow taller than me as she is already at my shoulders and has not hit puberty yet, but she is definitely shorter. My SD is in the picture next to her is 10 for comparison.
What I am getting at is depending on the bone age results there may be more testing and this may go on for quite a while. My oldest SS has gone through the same thing as well (the red ranger in the photo) he is 9 and his little brother (next to him in the picture) is 7 so you can see the height difference there as well. His results came back normal as well. My DH and his ex-wife are both average size.
Sometimes children are just small and are "normal". I would not worry too much!
Hang in there for the results, not much can be done until the dr's know what's going on, and they may ask for lab work to be done. DS has this, partially because he's been on steroids since he was 18m, and because of some medical conditions. He followed the growth curve exactly from birth to age 2 (well over 100%ile), then slowed growth due to the steriods and because of kidney failure, et.al. His normal was not to be short, based off previous growth charts, and DH and I being tall ourselves.
His latest bone age was at age 12, done the week of his 14th birthday. At age 12m, he was 32lbs and 36". He will be 15 in April, and stands at 5' 1", his 9 yo sister is barely an inch behind him. He was on Eprex (growth hormone) for a while, but it aggravated his transplanted kidney and his hydrocephalus. They have no plans to continue it for only that reason. While he was on it, it worked well. I feel for him, because he is holding out hope that because his bone age is 2 years behind, he still has some growing to do. In the meantime, we have to boost his confidence that being short statured isn't a bad thing (he's almost as tall as dh's dad!).
My DS is on Growth Hormone shots. He get a shot every night before bed. He started at age 3, so it has been a little over 2 yeras now. He should be on them until puberty.
Our story in short.. DS fell off the charts at 6 months, he didn't grow at all between 6 and 9 months. We had to get lots of bloodwork done and bone age scans. Then they sent us to a Children's hospital 2 hours away to see a Geneticist. They ordered full body scans to test for dwarfism, etc. ( he is not a dwarf.. he was just super tiny.. and cute) he was about the age he is in my avatar when we went. Anyway, next step was endocrinology. We moved states so it took awhile to get into one. He got in at 18m and he has been followed by his Endo since then. he also sees a GI Dr. He has been through many tests. The main test to decide is called a Growth Hormone Stim test, it is doen at the hospital and takes several hours. he did that at age 2.. it sucked. this is all the short version of the story... anyway.. so yeah he is on shots. It was lots of tears at first and just broke my heart. Now it is no big deal. He pulls down his pants before bed and tells me thank you afterwards.. no tears... thank you for giving him a shot.. sweet boy!
Don't worry too much.. easier siad than done I know. It is such a part of our lives now it is not a big deaal. DS has gone from not being on the charts to 16% last we checked, it has to be higher now since they doubled his dose last visit.
Oh for insurance to cover kids have to be under the 1.2%.. it is very hard to get shots covered. It wasn't for us, but I have heard it can be hard They are very expensive. ( like 2k a month!)
Good luck with your journey. I can answer any questions you might have also check out the Magic Foundation website, lots of great info there!
Woah.. at 12m your DS was bigger than my DS was at 3 1/2 on the shots! My Ds was estimated to be 5'1" as adult his bone age was not delayed.. was an an infant but not beyond that.. a bummer. A delayed bone age is a good thing!
DS isnt growth hormone deficient but has a genetic growth disorder called Russell Silver Syndrome and part of that is that his body doesnt process growth hormone the way a typical child would and he has been getting growth hormone injections since he was 13 months old. As some pp have said I would recommend getting a bone scan done to see how "old" his body actually is (a delayed bone age is a GOOD thing-- it means your child will have more time to grow!), a growth hormone stim test and some blood tests to check the IGF levels. DS' body makes a normal amount of GH but he just needs a little extra.
I would HIGHLY recommend getting in touch with the MAGIC Foundation- (www.magicfoundation.org). They have been a huge support and wealth of information for us regarding DS' condition. Without them we really wouldnt have had any idea of where to start as far as what dr's to see, what to expect, what testing to have done, how to get a treatment plan started, etc. If you give them a call they can help point you in the right direction, get you in touch with some other parents who have a lot of experience, and offer tons of support. The most important thing when it comes to growth related things is to get a diagnosis as soon as possible and get a treatment plan started as quickly as possible. When it comes to matter of growth the "wait and see" approach can be incredibly detrimental. The MAGIC Foundation motto is that our kiddos have a short time to grow but a lifetime to live with the results. We want to maximize their growth and health as quickly as we can! GL!
Magic is SOOOOOO awesome! They were SO helpful when we were first starting the injections. It was so great to talk to other parents who have been through the same thing! I had so many questions when we started the shots! it is really amazing how something that once seemed so big just becomes a part of everyday life!
Try not to fret too much.. a delayed bone age is actually a good thing. means he will have more catch up growth time. Also, there is a margin of error in analyzing the bone age scans at that age. It truly will all be OK.. it is a process but isn' the worst thing for a kiddo to go through. Hang in there. Contact the Magic foundation.. seriously a mom will call you back and they are SO helpful!
Wow, he started so young.. sweet guy. It truly is amazing how much the shots help. DS's dose was just doubled and OMG has he grown. When I look back to when before he was on shots it is just crazy how small how was and how much he has grown! Glad your DS is responding well!
Big bummer. The genetist and endocrinologist are hoping genetics kick in, especially with the delayed bone age. He was previously estimated to be 6'4" adult height. To be honest, I doubt he'll be taller than me, but that's not bad, I'm 5'9" and taller than a lot of men. His nose is out of joint because his sisters will be in the 5'10 to 6'1" range.