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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I will start. Will is age 6 years, 5 months: height is 43": 51 lbs, duplication 54-57.
Char
Cade is 6 years old 7 months 49lbs and 44" and1/4" duplication of 45 and he takes 3/4 dropper of def.
Sam is 6yrs, 6 months. 42", about 42#. Deletion of 50. He takes 15mg deflazacort (1/2 tab).
Char Burke said:
I will start. Will is age 6 years, 5 months: height is 43": 51 lbs, duplication 54-57.
Char
- Geez - if my head weren't screwed on, I'd lose it. Anyway, W's on 21 mgs. deflazacort daily.
Xavier is 7 years, 3 mos, weight is approx 50lbs (can vary by 2 lbs either way over the past 6 mos)
deletion of exons 48-52
deflazacort 19.5mg going up to 21 next week
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.
Christian will be 7 in Feb. He is 48 inches and about 54lbs. Exon deletion 51-55. 18mg a day.

Darcy
HI,
Danny is 6 y 7m. 41lb and 41.5 inches. deletion 46-48. 15mg of deflas.
Laurie, I new Sam and Danny where similiar but seriously......:)
Avery is 4 years, 9 months and is 39 1/2 inches. He weighs 36 lbs and is on 12mg deflazacort. He has a duplication of Exons 3-7.
Kian is 8 and huge, just like his dad. He weighed 95lbs. before Deflazacort. He is now 99lbs. He has a deletion of 51. He takes 30 mg Deflaz.
Mohamed is 7.6yrs old 45lbs just start DEFLAZACORT a week ago:18mg/0.8ml[liquid],so far so good.
Daniel will be 8 next month. He is on 7.5 mg/deflazacort day. Height is 48 1/2". Weight 75lbs. Deletion of exon 51.

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