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Hi,

My son has exons 8-24 affected and was hoping for some advice on anything that might be able to help. He is currently on steroids. He is still ambulatory but  seems to struggle.

Thanks

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Do you mean things to help right now, or things in the research pipeline?

I was wondering if there was anything specific involving his deletions. And if there was any way I might be able to get clarification on out of frame and in frame deletion. The neurologist he see's feels that he is doing really well for his age. Is this just because every child is different or does where the deletion is located have to do with this? Thank you

Joshua has the same affected exons but they are duplicated. How old is your son?

He is 8. On his report it doesn't state if they are duplicated. Its says 8-24 deletion/duplicated so Im not sure. How old is your son and has anything helped him?

Joshua is 11. On my page is a list of the medications and supplements he takes. He was just fitted for a wheelchair yesterday for longer distances and crowds but still walks with his feet flat on the ground.  Josh gets physio twice a day or as needed at school and we do Reiki at home as needed. We have a high protein, real food diet, nothing instant, at home.  He is very aware of his body so he knows when he needs to rest, what foods he needs to regenerate,  and if something isn't right. When we go to the doctor, the doctors discuss with Josh and we listen. 

Thank you for your help. We eat pretty much the same way. He takes Prednisone instead and we do a lot of stretching.

Does Joshua take Coq10 or creatinine?
 
Joshua's mom said:

Joshua is 11. On my page is a list of the medications and supplements he takes. He was just fitted for a wheelchair yesterday for longer distances and crowds but still walks with his feet flat on the ground.  Josh gets physio twice a day or as needed at school and we do Reiki at home as needed. We have a high protein, real food diet, nothing instant, at home.  He is very aware of his body so he knows when he needs to rest, what foods he needs to regenerate,  and if something isn't right. When we go to the doctor, the doctors discuss with Josh and we listen. 

No, Joshua does not take coq10. He did before the Idebenone though. The idebenone acts like a super coq10. As for creatine, we eat a high protein diet which stimulates it. The heart issues regarding taking creatine made us want to stimulate it naturally.

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