The medication

So I've probably mentioned we've decided to put Seth on deflazacort-it's a steroid that is a derivative of prednisone. You can't get it in the U.S. so I had to order it from the U.K.-even so it's not too terribly expensive-about the price of a name brand drug copay with insurance. We chose it over prednisone because it has less side effects, most notably less weight gain, so you don't have to watch the diet like a hawk so much. He will still have to eat sensibly, which is hard because he's picky and mostly likes "kid" food like mac and cheese, spaghettios, chicken nuggets, etc., which have too much sodium in them, and you're supposed to watch the sodium intake, because too much can give them a moon face because they are retaining too much water.

The main benefit of the med is that it's supposed to keep them ambulatory longer, and even after that can help improve their lung and cardiac function, too, and can either put off or eliminate the need for spine surgery that many DMD boys need at some point. Which are of course good things. It's just hard putting him on something that also has so many side effects. Cataracts (although almost always not interfering with vision), osteoporosis, stunted growth...and some neurologists will do growth hormone therapy and think that it helps with strength and flexibility, and obviously feeling "normal," but some think that it doesn't help and can actually hurt, because it's better if the boys are small. I think our neuro is in the growth hormone camp, but we'll just wait and see I suppose. Seth's always been smaller than most other kids anyway, so I guess he's sort of used to it.

I think we'll probably start the deflazacort in the next week or two-I don't want to wait till our next neuro appointment because it will be close to school starting and I want him to have time to get used to it and for us to be able to monitor how it's going before that. Wish us luck.