Wednesday, June 5, 2013

The Flip of a Switch

For some reason, this year's doctor season has ended up being 6 months long instead of the usual 6 weeks. We have one more straggler next month, which will wrap up this season just in time for the next to start.  Last week, we had our check-up with endocrinology to monitor Collin's growth hormone dosage.

Here is a super short overview to orient you in the growth hormone story:
- We pursued growth hormone therapy primarily for the increase in muscle mass and the anecdotal reports of developmental progress rather than linear growth.
- Collin receives growth hormone NOT because his body doesn't make it, but because his brain couldn't properly regulate its secretion.
- We had a rough start as Collin reacted adversely to the preservative in the commonly used HGH pens, but finally found a way to give him the hormone using sterile water as a base.
- Collin responded well to treatment and was on the growth chart within 8 months.
- At our last checkup, I expressed concern at how fast Collin was growing and the tight ligaments and sore Mama-back that come along with that. The doctor agreed to keep Collin's dose the same rather than increasing it for his weight and see how he responded.

Well, it turns out that decreasing Collin's dose did nothing to slow down his growth. In fact, his rate of growth increased over the past six months. This was baffling to me, but in the words of the endocrinologist, "I think my buddy Collin may be drawing a long stick for once. He's drawn his share of short sticks and I have a feeling he may have gotten the long one this time." Translation: it almost NEVER happens, but the doctor believes that Collin's brain may have flipped a switch that is allowing it to properly regulate secretion of its own growth hormone.

I was thrilled, of course, to hear this, but not entirely surprised. Over the last three months, a couple of other changes have surfaced that can only be attributed to a sudden maturation and/or organization of the brain. First, Collin started sleeping through the night. It used to be normal for him to get us up three to eight times every night, not including the instances we slept through out of sheer exhaustion. Over the course of a few weeks, he just stopped getting up at night. During this time, even though he was sleeping more soundly and despite his bipap machine, he was continuing to have periods of apnea and oxygen desaturation throughout the night. Then, suddenly, this stopped too. His oxygen saturation shot up to the 'normal' healthy range and it's been weeks and weeks since he has had a legitimate desat. It's unbelievable. This is the kid who, in his first sleep study was having 30 desaturations or more PER HOUR. The kid who, even with oxygen streaming into his nose, would commonly drop his oxygen levels into the 60s (!!!!). And now he just doesn't. Like, ever.

So, what now? Well, aside from enjoying our improved quality of sleep, we are going to leave Collin on what's working for a while and then repeat a sleep study sometime in the next year to explore weaning options for oxygen (which he uses during naptime) and bipap (overnight). In terms of growth hormone, we left the dose the same again, so we will basically allow him to self-wean by outgrowing his dose and watch his growth.

As with everything else in the past 4 1/2 years, the only way we'll know what comes next is by watching Collin and following his lead.

1 comment:

  1. Such encouraging news. Hope the next set of dr visits don't drag out for you.