The general concensus I'm getting is that Deflazacort is much better overall than Prednisone, we may try him on Pred for a few weeks and see how it goes,my other main concern is that Ryan also has Aspergers syndrome and I worry about how this affects him emotionally, I'm particularly worried about "Steroid rage".Thank you one and all for your feedback,much appreciated
Our son was just diagnosed last June and he too is 8. He will be 9 this November. Steroids are the single most best thing you can do for you son to help slow the progression of MD. He started on Prednisone and were scared to death that our little sweetie would turn ugly. After a month of the prednisone, we had to stop. Liam had become hyperactive - and I mean hyper. He also starting eating like a horse and gained nearly four pounds in a month. The Moon face started as well. No drug is worth turning your child's personality into a monster. A lot of kids tolerate Prednisone well. Liam did not. So we switched to Deflazacort and are SOOOOO glad we did. The hyperactivity is gone, Liam is Liam again. During the Prednisone month, I found myself disciplining Liam way more than usual. Generally, he doesn't that at all, but on Prednisone he did. With Deflazacort, he is not hyper and his appetite is back to normal as well.
We love deflazacort. But we have only seen slight strength changes in Liam. Prior to starting any steroid, Liam was running, slower than his peers, jumping, making obstacle courses in the yard, swimming, playing and never tiring out. Now, he seems a wee bit stronger, but was strong to begin with. That is where my frustration lies. Liam had so symptoms of this horrid disease - he was never a floppy baby, he hit the milestones on time, he's very bright, he doesn't fall down, he sometimes gets up from the floor in gower, but not all the time, he goes up and down stairs - all this he could do before starting steroids. He will be none in three months.
I latched on here because your son is 8. Did he have symptoms before the diagnosis? Have you all started steroids? Are you sure it's DMD and not early BMD? Please tell me more about your son.