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  • Miami, FL
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Sudden movements / tics

Started this discussion. Last reply by Shawn Sep 4, 2015. 4 Replies

Hello ,My 8 year old boy has been doing some involuntary movements it went from a lot to not much but we are still concerned . We stopped all suplements right after this reaction and he is not on…Continue

No steroids ... Any other options?

Started this discussion. Last reply by wainaina muiruri Jul 23, 2015. 6 Replies

Hello,My little boy who just turned 8 was diagnosed with DMD a couple of months ago .Doing all crazy research on line we find out he qualifies for the exon skipping trial for Eteplirsen .But he needs…Continue


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At 3:53am on July 13, 2015, Leresa said…
Yes the doctors also kept giving me the run around for almost four years. it wasn't until I took Mj to the emergency room at a children's hospital and demanded answers That they were able to check his CK levels and refer us to a specialist with suspicions of DMD. Right now Mj, is happy and still walking. The weakness is progressing however. He's started falling down harder and much more frequently. It's starting to take him longer to get up and move around in general. I feel like it's almost too late and I have no other option other than steroids. He's also started complaining about his shoulder muscles hurting. I am terrified about the future. But I know I have to concentrate on the present.
At 9:08am on July 12, 2015, Leresa said…
Hi Mirtha! Sorry to hear about your son's diagnosis. My seven year old has recently been diagnosed as well. Maybe we can help one another to learn about alternative regimes for treatment. I am really hesitant about starting steroids as well
I find relief in knowing my son is not the only one with such a late diagnosis. If you don't mind I'd like to know more about your son 's current condition.

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