Dealing with a possible growth hormone deficiency

October 13, 2009 8:44 PM

Our son may have growth hormone deficiency. The endocrinologist has recommended some additional testing, and the process sounds terrible. Has your child been through this? Can you tell us how it went? Are there alternatives?

Our three year old son is very short for his age (off the bottom of the standard growth charts). After a recent visit to the endocrinologist, it looks like he's going to need additional testing. The testing methodology sounds gruelling -- no food after midnight through the duration of the test, which will start early in the morning and last around six hours. That's six hours with an IV and his arm immobilized. But wait, there's more! If he is diagnosed with growth hormone deficiency, he's apparently in for a regimen of daily injections. Every time I think about this I get upset. He's only three!

Have you had to shepherd a child through this diagnosis? Can you offer any tips for making the processing as bearable as possible? Are there any alternatives that the doctor hasn't mentioned?

Obviously the diagnosis is important. If he does have an actual deficiency it could have a significant impact on his health. I'm just afraid of traumatizing the little guy. Thanks for your help!

posted by anonymous to Health & Fitness (9 answers total)

I am not a doctor. I am a mother and have zero medical expertise, so please don't take this as medical advice. I also haven't been through this exact situation, though I have been through episodes of medical concern for a child who was not growing as vigorously as most. The docs ordered an X ray of the child's wrist to see if he was simply immature (and therefore would probably grow more, just later than most kids). If you have not done this yet, you could consider asking the doc if you could do the X ray first - if your little guy has the bone age of a 2 year old, maybe he won't need the other test.
Good luck. I totally know how stressful this is. (If he has to go through the test, bring a portable DVD player so you can play a million of his favorite videos in a row. I know that won't help much, but it's amazing how much time can melt away with a video.)
posted by keener_sounds at 9:07 PM on October 13, 2009

My son has also had endocrine problems, which have been successfully treated, and he has dealt with the needles really well.

I hope it will be some consolation to you to know that in my experience, people who spend their days giving needles to children are very good at it, and that children who get a lot of needles quickly figure that out, and stop worrying about it.

My son is now completely unstressed about needles, he just flops into the chair and barely breaks the flow of his conversation while they take blood from him.

It was very amusing for him recently when vaccinations were held at his school and the other kids freaked out.

best of luck
posted by compound eye at 9:11 PM on October 13, 2009

Your attitude will, in large part, determine his attitude.
If you act like skipping breakfast is a horrible awful thing, he will act that way, too.
If you act like its an bothersome inconvenience -yucky but not that big a deal- and we'll have a special treat afterwards-well then, his attitude will follow along.
posted by SLC Mom at 11:26 PM on October 13, 2009 [5 favorites]

I grew up with two boys who had some sort of growth hormone deficiency that made them both really short- they were always at least 2 years behind the rest of us in perceived age all through school. The older brother had some kind of steroid shots and his adult height is about 5'3". He's short, but he has musical ability and a reasonable level of confidence. The younger brother did not have the shots nor the artistic talent, and at the end of his growth he ended up around 4'11"- too tall to be a little person and benefit from that community, but short enough that it's a big deal to him. He has had a conflict-driven life with a lot of insecurity and anger. To this day he's a goth (in his mid 30s!) and I'm pretty sure that's only because the platform boots and the mohawk bring him to 5'2".

So my anecdotal advice is to do whatever you can to help your kid get taller- do the tests, get the shots or whatever... but more importantly, make sure he has talents and interests that sustain him and give him confidence and social cachet in school. Maybe start him with guitar or drum lessons as soon as he's old enough, because guys who are good at music will always have something to help them feel good about themselves, and rockband-worthy musical talent in high school = instant friends who won't care if he's short.
posted by twistofrhyme at 11:41 PM on October 13, 2009 [1 favorite]

daily injections

My brother did this from ages ~11-18. It quickly became no big deal at all. He outgrew the "if you don't do this..." height projections fwiw.
posted by salvia at 12:19 AM on October 14, 2009

My cousin did the daily injections thing during adolescence. We come from a long line of shorties, and before the injetcions his projected height was 4'11", I think. Now he is 19 and 5'5. He doesn't regret them at all.
posted by pintapicasso at 7:46 AM on October 14, 2009

Even though the testing experience sounds grueling, it's less than one day of your and your son's life. Those hours of discomfort are worth it so you can be informed about your child's health status and intervene as appropriate. Almost any medical test involves this kind of trade-off, whether it's the momentary sting of having blood drawn or the more considerable discomfort of prepping for a colonoscopy.

If he does have GH deficiency, obviously there are risks and benefits to consider about treatment. Some of the stories others are giving you here speak to the social and psychological problems that can develop without treatment. I think people are often too quick to dismiss these effects, especially if they're normal height (it's easy to think someone will just "get over it" when you haven't been in their situation), women (for whom height doesn't have the same cultural significance), and adults (because we so quickly forget the treacherous waters of childhood and teen social dynamics, and the lasting effect they can have on people into adulthood).

On the other hand, if he doesn't have GH deficiency, that is also important for the doctors to know so they can look for other explanations. Maybe he has something really rare that requires treatment, but the doctors aren't going to look for it if they can assume he has untested GH deficiency. I think the chances of this are pretty slim, but still.

Going 12 hours without eating or flexing the arm is not as tough as it sounds, and if YOU have a good attitude about it, he will too. You can make the decision about daily injections if and when it comes to that, but it really seems like the responsible thing to do is make an informed decision with all the best info testing can get you. Good luck to your whole family!
posted by vytae at 8:11 AM on October 14, 2009

I have Hypopituitarism for which I take Growth Hormone.

I take a daily injection of GH and will for the rest of my life. The first time I took the injection (I was 5) I was scarred/cried a lot and it took me a few hours to actually inject myself!

From then on I've been fine with it and just see it as part of my daily routine.

I have (and still do) use a 'pen' (injection) that covers the needle so you never see it going in, which is probably what they will provide your son.

If you want to talk about this in any more detail and you have a throw away email please let me have it alternatively contact me through MeFi.

Also this website has a lot of useful information about GH as does this one.
posted by nam3d at 8:17 AM on October 14, 2009

How useful the internet can be, here's a step-by-step guide on how to inject your child with GH using the Genotropin Pen (which I use).
posted by nam3d at 8:24 AM on October 14, 2009