Question for those with older children...
What was the rate of progression in your son? Was the loss of mobility and onset of cardiac and pulmonary issues evenly paced - or - did things happen in spurts, where he was fairly stable for a period and quickly lost function?
I'm mostly interested in the progress after you've been on steroids for a while. After the initial stabilization, or improvement in function that some see with starting steroids - how did it progress after that?
Thanks for anything you can share.