Deflazacort was recommended for my son, age 8 (diagnosed with DMD in Feb 14). I have read the comments here and read the available facts online. How does one make this decision? To dose or not to dose. I guess it is not really a question of IF but of when. Our son is mildly impacted currently.
For those of you who have been on deflazacort, how did it work for you? What side effects did you have? Were they tolerable? Did you see positive impacts?
It seems like many of you have been on this for many years so I'm hopeful I can learn from you. Thanks!~
Simon has been on daily deflaz for just over 7 years. We have not experienced significant side-effects yet, besides for stunted growth (he is only 4ft 5in at age 14) . But if I had to do it over again I would have tried alternate day or 10 days on/off regimen instead of daily. Growth hormones won't work very well in combination with steroids, and are quite expensive if not covered by insurance.
Some hair growth (neck, hairline, thicker eyebrows), some emotional meltdowns (better with age and maturity), no osteoporosis or scoliosis yet (he loves to drink milk though), no cataracts.
He still walks okay, only uses a wheelchair or scooter for long distances or lengthy outings with lots of walking, but he was in the drisapersen exon skipping trial for 2 years.
And of course their facial appearance changes, rounder face, but that was always the least of our worries.
My son got stammering.
Pls. check: http://www.masters-uk.com