The months of September through November are somewhat of a blur for me. I bizarrely keep track of time these days by which hospital admission we were on or recently discharged from, and there were so many during that time, everything gets mixed up in my head. So I don’t remember when exactly, but some time, Teddy’s nephrologist mentioned starting growth hormone injections when he turned 1. Some of the moms in my Facebook kidney group give their kids HGH shots, and I had tentatively decided, in my natural parenting mindset, that we were not going to do HGH. That ultimately, things like looks and how tall someone is don’t matter. That he would be happy and healthy regardless of his height.
And all that is true.
I tend to spend a lot of my downtime on hospital stays doing research, so I dived into research on HGH for infants with kidney failure. And I will say that I surprised myself when I ultimately decided that it would be the best thing for him.
Not just to grow taller. (Frankly, if he stays where he is on the growth chart, which is well below the 2% line, he’ll probably grow to be as tall as his grandparents and perhaps even reach his aunts. I didn’t marry into a tall family.) But to make room for that new kidney. (Of course, at the time, I wasn’t expecting to be thinking of transplant until quite a bit later, so I was thinking the HGH would have several months to kick in.) And also to replace something his body’s not making or using well.
I would be against HGH if it was just “hey, he needs to be taller.” But I’m surprisingly OK with it when we’re using it to bring his body systems back to normal. I’m not trying to make him taller, I’m trying to give his body something it would have or use appropriately if it were functioning normally. Just as I give him aranesp to replace another hormone his body’s not making (kidneys make a hormone that tells your body to make red blood cells, but kidneys that don’t work don’t make this hormone, so we give it to him as an injection).
I already give him a weekly Aranesp shot, and though that’s not awesome, it does go ok. HGH is a daily shot, though, and I really was not looking forward to that aspect of it. However, I’ve been doing it for a week now, and it’s really not a big deal. It is, however, just One More Thing.
It comes in this little pen deal, rather than a vial and syringes like the aranesp. I’m not crazy about the pen, but I DO love the needles – they’re SO LITTLE. The first injection I gave Teddy, I practically jabbed that thing clear through him, because I used the same amount of force I use with the aranesp, but the norditropin pen just glides right in. The sucky part is holding it in and counting to 6 before pulling it out, because of course he’s a baby, and he’s not exactly sitting still for me. But the awesome part is that by the time I’ve set the pen down so I can pick him up, he’s largely done crying.
The worst part is when he sees I’ve gotten out the alcohol wipes, to be honest. Poor kid. Just like the worst part of labs for him isn’t the poke (usually), it’s the tourniquet.
So, here’s a brief look at the research. As with everything related to kids (particularly little kids) with CKD stage 5, there’s not a whole lot out there. The NKF KDOQI guidelines are all based on expert opinion, not necessarily actual research, which is a little unreassuring, but there’s just not that many little kids out there with kidney failure on which to do tons of research. It’s a frustrating reality that I run into often.
…a substantial percentage of patients (as many as 60 percent in one study) who develop end-stage renal disease (ESRD) during childhood, develop marked short stature and attain a final adult height at or below the third percentile on a standard growth chart. Although a variety of factors play a role in the varying degrees of growth impairment seen in children with renal disease, the patient’s age at the onset of renal insufficiency can have a significant impact. It is well recognized the younger the age of the child at the onset of renal disease, the more severe the growth impairment tends to be. While complications such as malnutrition, renal osteodystrophy (bone disease) and acidosis may also contribute to the poor growth rates and need to be treated aggressively in all patients, abnormalities related to the function of growth hormone and related substances exert their influence during mid-childhood (age three to puberty) and have the most profound influence on growth delay in this population.
Growth hormone (GH) is synthesized in the pituitary gland and indirectly promotes the growth of a child by stimulating the production of insulin-like growth factor 1 (IGF-1). IGF-1, which directly promotes cell growth, is produced in the liver, growth cartilage and many other tissues. Its production is in part dependent on an adequate dietary protein and calorie intake in addition to the presence of GH. Paradoxically, many children with renal disease and growth retardation have normal or elevated levels of GH in their blood. In contrast, the levels of IGF-1 that are needed to stimulate growth are low. The low levels appear to be due to the presence of proteins in the blood that are normally removed from the body in urine, but accumulate in kidney failure. These proteins bind to and reduce the function of IGF-1 which results in the suboptimal height velocity characteristic of children with impaired kidney function.
The article makes the point also that a lot of parents and patients turn down HGH therapy, only to desire it later on, when it’s too late. The time to administer HGH is before transplant, ideally, and while the child is still young enough to have a lot of growth potential.
Does HGH work, and does it have negative side effects in this population?
Fifteen RCTs (629 children) were identified. Treatment with rhGH (28 IU/m(2)/wk) resulted in a significant increase in height standard deviation score (SDS) at one year (MD 0.78 SDS, 95% CI 0.52 to 1.04), and a significant increase in height velocity at six months (MD 2.85 cm/6 mo, 95%CI 2.22 to 3.48) and one year (MD 3.80 cm/y, 95%CI 3.20 to 4.39). Compared to the 14 IU/m(2)/wk group, there was a 1.34 cm/y (0.55 to 2.13) increase in height velocity in the 28 IU/m(2)/wk group. The frequency of reported side effects of rhGH were similar to that of the control group.
Most of the studies I found about HGH and kids with renal failure suggested that there were some things to watch for re: concerning side effects, but that side effects were uncommon and similar to those experienced in a control group (of kids not receiving HGH).