I am interested in hearing from parents who are giving their boys deflazacort and what the amount is, your son's weight/height, age and what the mutation is - i.e. duplication 54.
son of Will age 6
Daniel used to be on the dose appropriate for his weight. He couldn't tolerate it - mostly behaviorally. He was going into constant rages and his sensory issues went through the roof. He has more of the cognitive issues that some of the boys with DMD have (they say about 1/3). He was also starting to put on weight rapidly last year. We decreased it down to a level that I hope is still going to benefit him some. It is my hope that we can try and increase it again.