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
James was diagnosed 2 years ago just after he turned 2. He was unable to walk up or down stairs, run, jump, ride a tricycle, and he kept falling down even when he was just walking. We put him on Deflazacort almost straight away, as we felt the need to "buy him some time" was more important than the side effects. Within a few months he wasn't falling as much (although still falls occasionally when he runs), running really fast, jumping continuously, jumping down from steps and landing on his feet, climbing up EVERYTHING, walking up and down stairs using alternate feet, swims like a fish unaided and getting his head up to breathe, and now he is able to ride a proper bicycle. He is still slower than other kids, but he does his damndest to keep up with them. I find he is getting tired a lot faster, but that is to be expected. With a little rest, he is back on his feet and active again.
The downside is probably the weight gain and the behaviour. He now weighs 22kg, but he doesn't look fat - he is just solid. Looking at the rest of my family and my husband's family, that could also be in his genes. My 3 nephews are exactly the same. His growth initially slowed down, but he has grown 5-7cms in the past 12 months and is now back on track.
His behaviour has become more agressive, but after talking to all the other mums at his preschool I have discovered their 4 year old boys are exactly the same. Having been brought up with girls, I have never been exposed to 4 year old boys and their "4-year-old shot of testosterone". He is a sensitive child, and this hasn't changed. His speech, cognitive and motor skills are fantastic after some work with specialists (and at home) and he is every bit a "normal little boy" who wants to be Superman!
Personally, I am glad we made the decision to put him on the deflazacort as the benefits have most certainly outweighed the side effects. However, maybe I need to revisit this topic in a few years and see if there are any more changes. HOpefully by then, PTC124 will be proven effective and he will be on that, and maybe won't need the steroids.
Something to consider, they say steroids provides a little more protection for the heart and cardiomyopathy is something practically all DMD boys end up with. This is certainly something to keep in mind.
My other advice is to make sure he is getting a good supply of vitamins and supplements. We give James a multivitamin with phytonutrients and probiotics, Omegas 3 + 6, antioxidants, CoQ10, Vitamin D, and Calcium. I don't know if they make MUCH difference, but I am sure every little bit helps and they won't be doing any harm.