I am a mother of 14 year old identical twin girls. Last year one of my daughters was having severe leg pain during exercise and wound up being hospitalized for Rhabdomyolysis. Her CPK was 68,000. This was the catalyst that brought us to the diagnosis that not only does Paige have the deletion for Duchenne, but so does her twin, and so do I. I have always been extremely active with no symptoms other than a few episodes where my heart starts racing but it goes away quickly and has happened maybe 4 times. I am 45. Hailey, Paige's twin, dances 5 days a week and has no symptoms. She does complain of knee pain but I think that is more due to dance than Duchenne. Paige has leg pain, tires easily, has back pain, slight scoliosis, and a very high CPK. Since her diagnosis however, I feel that we were left with no advice for how to take care of Paige or how to help with her symptoms. It is as if no one knows what to do so they did nothing. Does anyone have a girls or girls struggling with Duchenne? What can we expect? Can we help her?
Are you in the US? Were you referred to your local MDA office? Paige should be seen at an MDA clinic. How is her activity level. Can she run? Ride a bike?