My son is 7.5 and I was told possibly an outliner. He runs as fast as the others kids at school, plays coach pitch and does not toe walk at this time. You cannot tell by apperance that he has DMD He was diagnosed two years ago. We are trying to tell him age appropriate about his condition. I have not used the word DMD , MD or Disease..(I hate those words and I'm sure most of you do)
He knows that he has to stretch to keep strong, he knows he takes muscle pills. He uses a convaid stroller for long trips. The PT at Cinci recently told him he needs to listen to his parrents about stretching if he wants to continue to walk. She said it loud and clear. His smile turned upside down! (that was last month) In March we took him to his first MDA event with a bunch of Celebs in Pittsburgh as well as older children in chairs. I don't feel that I'm sheltering him from his condition...but my son has changed and it did start shortly after the event..now that I think of it we did a walk a thon and older DMD children were present in the spring. Can any of you tell me if your sons have gone thru a denial/anger stage. He is not the same boy I had..tell me this is just a stage. When I try to talk to him about it he stares and acts like he doesn't hear me or he tells me to shut up. Sometimes he just goes off and we never had behavior issues before. (I thought it was because the brand of calcort changed) but Dr Wong states no...let me know if this is just his way of dealing with his condition and how long I can expect it to last. Does he know to much or to little at this time? We tell him he can talk to us or ask us questions about anything and he never does.