I'm sure you've read before, early and AGGRESSIVE treatment is the best predictor of outcome for JDM kids. I have no doubt it is difficult to watch your child go through solumedrol treatments but it is much better than the alternative (continued inflammation and possibly worsening of the disease). I went through solumedrol treatments as a kid - started with three a week (I think it was for eight weeks) then tapered to two a week for a couple months, etc. I especially hated it because every time I'd go in, I'd throw up and then didn't want to eat for a few days.
My labs were always within normal ranges. I learned this weekend, in DC, that normal labs are not all that uncommon so you cannot base the disease activity on that alone. You've got to be sure the disease has been quieted before you start tapering. The longer a child has active JDM, the more problems can arise.
The drugs we have to be on are scary and you've got to weigh the risks but please try to be patient with tapering. I've read so many stories (and experienced it myself) about how tapering meds too fast can lead to a much longer disease course.
As far as hearing a success story - I have had JDM since 1991. The combo of meds that put me into remission was solumedrol and methotrexate. I was off medication for 13 years before I got sick again. This time I have chosen not to go back on steroids and instead participated in the Rituxan/Rituximab study and am currently taking 12.5mg of methotrexate each week. This weekend I just finished the 10K in Washington DC.