Monday, February 11, 2013

Pump Some Iron

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....


Giulia said...

Sorry for what appears a dumb question, but I can't help wonder.

Do you think that his sleep problems can be related to this new mess ?

I ask it to you because there have been some scientific works showing that sleep apnea disrupts metabolism.

What also appeared on me from your writings is that Dean was getting better with the BiPaP and now, with him not tolerating the BiPaP, things are messing up like before.

A chicken and egg stuff, if I speak English and not Greek LOL

Of course, you know Dean better than I do, so these are ideas I give to you and I can be in the wrong.
I don't suffer from PWS and I don't have any close relative with PWS (but I suffer from ADHD and hearing loss, and geneticist thinks that both of these disorders together can be one and a same genetic disease. Wait and see...)

BTW, I hope that my explanation on the "Dairy free diet" post about the third party reader makes sense for you.
Again, I perfectly understood that it was an exchange of experience and that you didn't say or imply by no mean that it was a panacea.
But my experience of moderator on a message board makes me now very cautious about how unexperienced online patients can react and understand your post.
I raise my hat for all what you do for Dean and people with PWS, and my sayings for third party readers don't absolutely make your experience "less than".
I hope I made myself understand about this point, as it's more often than not a tricky point to understand by experienced online patients. Add in the mix the language difference...

I cross everything that I can cross for Dean and for you

Ali Foley Shenk said...

I read your other comments from the other post and meant to respond! Yes, I understand what you were saying. Thanks for taking the time to explain. :)

And yes, you and I are thinking alike on this issue. I sent Dean's doctor an email last night because I bet the sleep issues are related to all this. I'm not exactly sure how, but I bet they are. Like you said, metabolism and sleep apnea have to be related. I'm curious to pursue this more with his doctors. Thanks for mentioning it!