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Hi! My kiddo is not on growth hormones (yet?)- we are just starting the process with a pediatric endocrinologist to confirm if he has a GH deficiency. I found a parent group on Facebook and it’s been really helpful to educate myself and read about other people’s experiences. The specific group I joined is « childhood growth hormone deficiency support for parents ».

That makes sense. We’ve been waiting to see if mine (he’s also 5 and a half) gets a growth spurt and catches up too. That hasn’t happened. He was born a big baby though, and continuously dropped percentiles as a baby/toddler. Last time we saw our pediatrician, she did some blood tests and it came back low for growth hormone.

The idea of daily shots feels very daunting but it would also be nice to have answers and a path forward.

My son is also on hormone injections, but he has been a part of a study (we joined after it’d already been studied for 4+ years) that he only does an injection 1x/week. He was born preemie, and while he was a chunky baby, he was always very short. Finally after not gaining a single pound in over a year, we went to Endo and sure enough he was producing very little GH naturally. When we started, he wasn’t even on the charts for weight or height. 1.5 years later, he is the 19%tile for height and 45%tile for weight. We were of course hesitant to start, but I haven’t regretted it once. He has gained so much more confidence. It was absolutely the right choice for our family to begin. Maybe ask your dr about the injections that are 1x/week. There is one that is FDA approved and the one my son is on, is almost approved. Please don’t hesitate to let me know if you have any questions!

@Chuckles: our pediatrician just kept telling us “we’ll just keep an eye on him” starting at probably 5yrs old. We did a bone growth X-ray at age 6 and that indicated he’d be a late bloomer, so we kept watching. Between his 7th and 8th year is when he didn’t gain a single pound (despite my efforts to add butter and cheese to everything!) so we finally saw an endocrinologist at 8 years old. He started growth hormone by age 8.5 and is now 10. It’s definitely frustrating to wait and see…

@PinkElephant: although my son was born small (he came early), he very quickly gained a lot of weight. He was a solid weight until about 5 (always short, but never underweight) and then it took everything I had to get calories in him. His weight was so low that my two year old son and my 5 year old were practically the same weight and height. I’d get asked daily if they were twins. At first it didn’t bother my son, but the older he got, the more it bugged him (understandably so!). The year he didn’t gain a single pound, you could see his ribs on his back. That was when our pediatrician was finally ready for us to move forward. Once we began his weekly injection, he gained 7lbs in a month! Now he gains 2-3lbs/month. It was obvious to me his body needed weight gain in order to grow in height. Obviously I’m not a dr, so I’m not sure it’d definitely cause your daughter to gain weight, but I’m guessing it would.

The auto pen injector is so easy to use, and while my son *can* do it, he’d prefer I do it. Especially because you have to rotate injections sites, I’d have to do the ones on his back side regardless. I’m sure as he gets older, he won’t want me to do it.

As far as traveling, we didn’t have any problems. His specific medication has to be kept cold, so when we travel, I put the medication in 2 ziploc bags (so it doesn’t get wet), then add ice packs to a small Tupperware container. I tape his prescription to the outside of the Tupperware, and getting through security has never been a problem. If needed, I get ice to add to the Tupperware after we get through security. Just always have to make sure you have a fridge where you’re staying.

@PinkElephant: Sure. My son is currently six. The percentile numbers won’t be super relevant here because he takes HGH for a specific condition that is lifelong. He doesn’t have a deficit of growth hormone, but his condition makes it difficult for his body to actually process the growth hormone. So he will actually get injections until he reaches final height. The course of care is to give more HGH to give his body a better chance of processing it. But he has really been a great responder to it and is now on the growth charts and even moved up a curve on height.

He has helped do shots himself a couple times but he prefers us to do them. He prefers them in his buttcheeks so that’s harder to see/reach for him. We try to never miss a night, so we have a couple family members who know how to use the pen, but most other people are uncomfortable learning which feels frustrating sometimes. But if he misses a night here and there, we don’t feel bad about it at all! In a date night situation like you mentioned, we just give him the shot before we leave. So he usually gets it around 8pm but instead we would give it at 5 or 6, for example.

Travel is trickier with some brands and dispensing styles than others. Our favorite (and current) is the Norditropin flex pro pen. It can live at room temperature which is nice. If we are going somewhere that takes a while to get to, or if it will be in the heat, I put it in a cooler. But overall it’s pretty easy to travel with. In the past when he has had a pen that HAS to stay refrigerated, we often didn’t fool with it when we were taking a smaller trip (like 1-2 days) and weren’t confident we could keep it at a perfect temp the whole time. I hated that pen. Omnitrope was the brand. Steer clear of insurance allows.