I grew up in New Jersey and now live in the Detroit suburbs. I work as an engineer in the automotive industry. I have two sons, age 15 and 18.
We visit Cincinnati Children's Hospital for our primary MD related care. We also use the Pediatric Neuromuscular Clinic at the University of Michigan, and have been to the Children's Hospital of Michigan MDA clinic.
Name(s) of child(ren)/individual(s) with Duchenne:
Kyle, age 15. He has an in-frame exon 5 deletion with a DMD phenotype.
Age(s) of child(ren)/individual(s) with Duchenne:
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hi keith, you had mentioned in one of your emails to me couple of years ago that you were thinking of reducing deflazacort dosage for kyle. Did you do it and if so did you see any effects in terms of strength/dexa? we are thinking of doing the same primarily to see any +ve effect on dexa, but scared to try it. can you reply to firstname.lastname@example.org? thx..
Our Deflazacort shipment is being hold by FDA in the post office.We have ordered it with doctor letter even then did not go though custom.The letter from FDA states that drug you are importing are unapproved new drugs and /or can be purchased in the US.Anyone had the same experience,please share and help ?Thanks
MY NAME IS DEEPAK ARORA AND MY 6 YEAR OLD SON YUVRAJ ARORA IS EFFECTED FROM DMD (DELETION OF EXON 52)., DOCTOR'S HAVE PRESCRIBED STEROID (DEFLAZACORT) 0.9 MG ON-OFF SCHEDULE (10 DAYS OFF AND 10 DAYS ON) (AS PER HIS WEIGHT) HIS PRESENT WEIGHT IS 26 KG.
CAN YOU SUGGEST US THAT WHAT TO BE DONE BECAUSE I AM AFRAID ABOUT THE SIDE EFFECT'S FOR THAT.,
SECONDLY IF YOU CAN HELP IN MANNER TO INFORMATION ON THIS THEN WOULD REQUEST YOU TO KINDLY UPDATE US SO THAT WE CAN TAKE NEXT STEP TOWARDS HIS TREATMENT..!!