We get labs done for Dean through Dr. Miller, his endo and PWS specialist in Florida, about every 3-6 months. Admittedly, it's often closer to 6. Dean actually does quite well for kids with PWS in terms of getting his blood drawn. They almost always can get him on the first stick and get all the blood they need for the tests Dr. Miller orders.
Mostly, we do labs to check up on Dean's IGF-1 levels, which measure how well his body is using GH (including his own + the GH that we inject for him every night). But since he was diagnosed as hypothyroid, we check that especially, plus other items like blood glucose, etc. Even though Dean does well with getting the amount of blood that we need, he is VERY strong and I can't hold him anymore. We try to wait for a time when Bob can zip down from work (we get it done at the hospital where Bob works) so he can hold his body while 2-3 other adults hold down his arms. :( Dean is so awesome about this and it always reminds me of all the procedures and medications and everything that Dean has had done TO him. He handles it like such a trooper, even if he is pulling off his bipap all the time. :)
As I mentioned, we started B12 injections at the beginning of January and have seen great results. But after the last injection almost two weeks ago, I noticed that Dean was getting MORE tired. The benefits were not as noticeable, although they were still there. So I asked Dr. Miller if we could look into things and she wanted to check Dean's iron and all the rest of it. Turns out that Dean is quite anemic and is STILL B12 deficient even though we moved up his monthly injections to every three weeks. So now we are going to try every two weeks and we are going to supplement with iron. Apparently there is a connection between B12 and anemia, as both work together in the nervous system and can be depleted at the same time because of this. So basically, we think that Dean's body is making up for lost time and is just sucking up the B12. You know that country song "If I Fall, You're Going Down With Me"? B12 and iron are taking a little Jack-and-Jill tumble down the hill together.
As usual, I'm glad there is something to help, but it's just getting laughable how many medications and supplements it takes to get Dean's body working properly. I've updated the PWS Resources and Treatments page on here so you can see what I'm talking about. In many ways, PWS is just like any other metabolic disorder, as Dean's (and others with PWS') body is just not using nutrients, vitamins, and minerals properly. It's our job to help him. On to the next step....