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.
Thanks.
Char Burke
son of Will age 6
duplication 54-57

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Tim is 10 years, 9 months and is 50 inches tall and 75 lbs. He has a premature stop codon at exon 59 and he takes 24 mg of deflazacort (3/4 of a 30 mg tab and 1/2 of a 6mg tab)
Alex is 9.4 yrs. old - Weighs 53 lbs. and about 50" in heights. Takes 22 mg tab/daily deflazacort.
Hi,Karen I think the doctors go by weight for the dosage of the seroid,how come your son is just under 7.5mg and he weighs75lbs???
Hi Djamel,
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.
Karen

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