Today's appointments

Everything went well. They did an EKG and echo of his heart and they looked good. So basically we have to go back in a year to make sure there were no changes.

We also had another appointment with the neurologist, Dr. Chadehumbe. The appointment was originally to go over the bloodwork (to check various things and most importantly to find out where on the gene the mutation is) but we are still waiting for our insurance to even approve it so we can get it done, but she said we could still come in because we had a lot of questions. We discussed steroid therapy, which we will probably do. We are going to use deflazacourt-it's not approved in the U.S., basically because DMD is relatively rare and there is not a lot of money in that particular med. We chose it because it has far fewer and less severe side effects than prednisone-most notably weight gain, which we don't want because the heavier he is, the more his muscles have to haul around. There are still side effects, including osteoporosis and cataracts, but his bones will be monitored with bloodwork to check vitamin D levels and bone scans will be done periodically (he is actually getting his first one next week). The studies showed that even though most boys got cataracts, they were almost always small and did not interfere with vision at all.

I am so glad Dr. Chadahumbe chose to come to Grand Rapids-she worked with Dr. Wong at Cincinnati Children's, who is one of the top doctors in the field. A lot of people bring their kids from all over (including here) to see Dr. Wong-they see 400-500 boys at that clinic. As Dr. C was saying today, the training most neurologists get is very limited on DMD-but she got lots of experience in Cincinnati and really keeps up with the latest research and treatments. So I feel like we're getting the benefit of 400-500 patients of experience, but with a personal touch.

It was weird-on the way there we saw some firefighters out with boots (to collect money in), but we just thought they were collecting for their station or whatever. On the way back I actually saw the signs-they were actually collecting for the MDA! So we had to stop and give some money. Which we will probably get back in some form. :)