my son diagnosed with DMD in jan 2016 and still since then i am in a nightmare, i am trying to be strong for my kids and hoping that God give me the strength. when i read your stories it is like reading mine, i believe we are all passing in the same situation and understand each other, that make me happy and sad in the same time i am happy that there is some one that understand my sadness and i am so sorry that there is some one passing through what i am in which is so so bad and sad.
i am living in Iraq i think no need to explain how bad the situation here is! no health care specially for such cases which consider it as rare!
my kids dr suggested to put him on deflazacort , but i dont know how i can decide? did anyone get benefit from it? is its advantage is more than disadvantage? is it really slow down the symptoms?
pls let me know any information that you have...
i see that most of you tried since 2008. but i dont see latest update about it
i appreciate if you provide me with any information
thank you and God help you all and save your children
i pray for all of us.
We have two boys with DMD, both started on deflazacort at about age 3. Our oldest is about to turn 11 and our younger 8. They take it daily and have for years. We do believe, along with physical therapy, that it has had a very positive impact on their condition. In face, our oldest was screened out of a trial last year for being too fast. I haven't had any doubts about putting our children on deflazacort.
thank you people for information!
My son started Deflazacort when he turnd 3. He is on stable daily weight dependent dose. Now after 3 years I believe Deflazacort was a good choice.