Hi there. My son is 9 1/2 years old and we are definitely seeing a progression. Stairs are becoming more and more difficult. Getting up from a sitting position, walking uphill, running.....all becoming much more of an effort. While walking, he has developed that "chest out, shoulder's up" stance. More falling too. Being developmentally delayed, his maturity has always been a few years behind, so he is just now beginning to make comments on "hating his legs" and such. I knew this was coming, but it does not make it any easier.

I pray that he is one of those boys who is still walking in his teen, but I worry since we are seeing this difficulty now. (He has been on prednisone and all the other typical suppliments since he was diagnosed at age 3.)

Dr. Leshner says he is still looking good and his strengh scores are still 4's and 4+'s. His school PT also reassures me that although she does she a change in his stance and endurance level, he is still strong for his age and doing well.

Maybe it's harder because as he classmates grow and become more coordinated and athletic, the differences are more obvious. He is so much smaller and slower.

I know there are no solutions. Just sharing these feeling with others who "know" helps some how. Did I mention that I hate DMD with every ounce of my soul?

Views: 455

Replies to This Discussion

hi My son is 6 he started his kindergarten. i am scared to death to even imagine my son on a wheel chair. We see Dr. Lashner as well. Right now drs say that he looks good. But sometimes it becomes difficult to answer his questions. I pray to god to grant courage to all of us. These kids with dmd i have deep regard for our kids. they are super heros.
I feel like you were just describing my 7year old. Must I say that I am terrified of the future. I do find comfort in talking to others who "know " as well.

It just sucks. I have both a 6 year old and a 10 year old with DMD. We recently moved to a ranch house because my 10 year old could no longer go up the stairs. We are now battling insurance to get his wheelchair approved. He still can walk some, but the decline is noticeable. Just focus on what he can do and not what the other kids can do. Easier said than done. I have t remind myself all the time. My son is looking forward to his wheelchair. He calls it the tank. The kids think his scooter is cool. Make the best of everything. Make the wheelchair  or scooter sound exciting even if it makes you want to cry. Make a big thing out of everything. Celebrate every accomplishment, every birthday, everything! 


Need help using this community site? Visit Ning's Help Page.



© 2023   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service