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
James is 4 years 8 months, weighs about 50lbs, 43 inches, and has 21mg per day. He has a nonsense mutation, though can't say exactly where as I'm lying in bed replying on iPhone. I think it's either exon 22 or 28.