I wonder if it might be worth switching him to prednisone before taking him off deflazacot if it comes to that to see if it makes any difference, since we know deflazacort affects the eye differenlty thant prenisone, ie cateracts. Due to problems with customs we had to switch Jacob to prednisone for a short while and he did not have any trouble.
i guess i'm a little concerned that you feel the steriods are keeping the disease at bay. It might help the boys to feel stronger there for able to do more but it doesn't stop the muscles from being damaged. It might allow them to walk a little longer but each child is different in that as well. My son didn't do steriods at all and his friend did. They both ended up in the wheelchair full time around the same time frame. Another thing they tell you with steriods is that it might help prevent scoliosis later on, that also is different for each child. there are those both on and off steriods that have had to have surgery and then again there are those who don't either. So i guess what i am saying is yes do what you need to do if you feel steriods are best for your son but if he can't take them anymore than thats okay too. Unfortunantly steriods is not a cure, to me it is only putting a bandaide on the disease.
My son is also on deflazacort and genotrophin for about 3 yrs now. Hence i am worried and want to know what kind of test should i ask his dr to check his optic nerve? We regularly see eye dr at 6 months and he checks for cataracts.
I hope your son is ok.
Johnny only was on deflazacort not GH therapy. I kept him on the steroids and started the eye drops for high pressure. The pressure is now normal. I did not investigate any further( spinal tap, mri). His dr felt it was the steroids. What other eye issues? Also Cheri made a good point about prednisone.