I know I am fighting a losing battle with them but I'm concerned about the effect my kiddos contractures will have when it come time for the spinal fusion surgery. We had surgery done on his feet, ankles, knees, and hips to release them but even though his feet are straight, the contractures are still there. Not as bad as they were but my son still can't extend his legs all the way so he lays on his side or on his back with this knees bent. Does he have to be able to lay all the way down with his legs flat to do the spinal fusion? We have been working on him with stretches but it don't see how thats going to stretch him all the way out. If he still can get the surgery done with his legs they way they are, what are you guys doing about stretching? is there or was there a point when you just quit or are you all still doing them?

Views: 99

Reply to This

Replies to This Discussion

Hi Linda
My son is 16. I stretch my son each day. He uses a stander and he swims. He is still tight. We have a PT who comes in once a week. Even though I am fighting an uphill battle with his contractures I still continue to stretch him. I am not sure if there is a time when I can stop. As long as he isnt in pain I continue to stretch him. He also wears the feet splints and hand splints each day. I also have him do airstacking. All in all I think he is still better off that he is stretched.

Michelle
my son is 10, he has contractures in his heel chords. he still walks, but dr wong told me that he only has trouble getting off the floor and walking because of the contractures, she said his strength is not the issue. i feel horrible, but he hates stretching so we have never done much. he has sensory issues so it was a quality of life issue for us. not sure about older guys or spinal fusion...
Jenn
Im sorry to disagree but your sons trouble isnt only due to contractures. It most defintly has to do with his strength. Are you sure you heard Dr. Wong correctly? My son has been stretched since he was 7 and when he stopped walking at 12 1/2 it wasnt due only to contractures. It was his strength. If stretching would of kept him walking my son would of never stopped. So you dont need to feel horrible about not stretching. Its not your fault.

Michelle
Thought I would respond to your spinal fusion question. No your son does not have to be able to lay all the way down with his legs flat to do the spinal fusion. In my opinion contractures are just a part of the progression and the breakdown of muscle. My son is 22 and I still range him even though he has contractures. Don't neglect the arms and hands as well, if that hasn't been mentioned to you. Swimming is a very good activity for boys/young men with DMD. My son gets in the pool once a week and loves it.
Katherine
michelle, i know austin is weaker than most kids, because of duchenne, what i think dr wong meant is that he has the strength to walk he just cant balence because his heels are 4 inches off the floor, also he cant pull his knees together so that makes it hard to get off the floor. i know stretching doesn't fix duchenne, im just afraid he is going to be in a chair prematurely due to our lack of stretching. the truth is none of us know why some boys walk until age 18 and some stop at 7, and everything in between
thanks so much for that info...we were really worried about that. i try to do stretching as much as i can but as horrible as this may sound....i get so wrapped up in doing everything else that i forget to ALOT. avery and matthew did get into the pool when they were going to pt and they both loved it. my friend tanya just got a house with a pool so we are looking forward to stretching in that pool. problem is...i dont know how to swim but i plan on taking swim lessons. anyhow...thanks again that really helped

Katherine M. Reynoldson said:
Thought I would respond to your spinal fusion question. No your son does not have to be able to lay all the way down with his legs flat to do the spinal fusion. In my opinion contractures are just a part of the progression and the breakdown of muscle. My son is 22 and I still range him even though he has contractures. Don't neglect the arms and hands as well, if that hasn't been mentioned to you. Swimming is a very good activity for boys/young men with DMD. My son gets in the pool once a week and loves it.
Katherine

Reply to Discussion

RSS

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

Members

Events

© 2019   Created by PPMD.   Powered by

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