Friday, May 10, 2013

PWS Awareness Day #10: Growth Hormone

There may not be a cure for PWS, but there are some treatments. The most helpful so far is growth hormone (GH). We are so fortunate to have been able to start Dean on regular GH injections when he was only 4 months old. There are a variety of benefits for someone with PWS to be taking GH: increased lean muscle mass, increased muscle tone and energy, greater linear growth (height - otherwise, people with PWS are very, very short), and proportionality (people with PWS have some body parts that are different proportions), and even cognitive/IQ benefits if started early.

Dosing for GH is controversial in the sense that many doctors don't know how to dose for PWS - it's not just based on height and growth. Doctors can order blood work to check IGF-1 levels, which measure how well the body uses GH (both its own and the injected GH). Dosage can be adjusted accordingly.

We give Dean his GH injection every night, and he will likely need it for the rest of his life. I cried for the first week because I didn't want to hurt my kid, but Dean is such a champ about it. We always say, "it's going to make you big and strong!" And it has. For Dean, the changes were noticeable. He went from a puffy, sluggish baby to one who increasingly had more definition in his body and strength. He is long and lean and we know that GH plays a part of that. Dean's gross motor milestones were delayed, as to be expected, but now he is walking, running, and jumping like many other kids. I know his milestones would have taken even longer without GH. Here are two pictures of Dean right before and right after GH. Different kid.









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