I have mixed feelings about when to start. Our boy is 4, diagnosed at 2. The doctors say he is doing so well that they want to hold off on starting the steroids. While genetics put him in this mess, other genetics are helping him because he is very flexible and has a lot of muscle elasticity. They believe this is why his symptom progression is very slow. At this point, he holds on to railings for stability to climb up and down stairs. He has a small waddling gait with running. He gets a small amount of air under his feet with jumping. My only physical concern is his resistance to learning how to write since his finger grasp is weak.
One mom mentioned to me that starting him on steroids now would allow him to keep and improve on what he already has for physical abilities. She suggested that if I wait until he loses some of his physical capabilities, then the steroid may not be as helpful for trying to recover some of those physical abilities. FYI, I still need to run this by the docs too.
I was wondering if anyone has any has seen the case of not recovering some of the physical losses when starting steroids after you notice an increase in DMD symptoms. Does anyone else agree that starting steroids while things are going better than average for his age is a good idea? Or is a good idea to wait until we start noticing degrading abilities?