CAN ANYONE GIVE ME SOME ADVICE.  My son's back really bothers him by the afternoon -- probably after sitting all day.  He was walking in December pretty good after an ankle fracture in Sept. but felll again and twisted his knee and is not walking that far these days. When he tries, he says his back hurts.  HELP!  He can walk but this back thing is in the way.

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Patti,
With all the falls I would be getting a back x-ray done. Maybe he did something to his back during one of his falls. I'm wondering if this back pain is a common theme though with DMD. My son, who is 9 and has had no falls or injuries often complains about his back hurting. I hope you get some answers. Let us know what you find out.
Karen
Hi Karen, Well he was x-rayed right afer his fall in Sept. and that is how we found the hairline fracture which healed in a few weeks. The tumble on Christmas Day was on a double rug and i took him back to the ortho surgeon and no break of any kind. He was also given a full spine x-ray in Cincinnati in November and all compression fractures were healed from the year before as he is taking Fosamax. I think he is just tight from sitting so much and these kids have the curve in the spine already. Kevin has put on a few lbs. since Sept. (about 5). So who knows.

The only other fall was about two months ago when he went to sit on a stool at school for OT (why?) and the Ot was not right behind him and he missed the stool and landed on his tailbone. I talked it over with his Physiatrist here and she saw him and did not think he got any kind of break. THe ankle break fall was a hard one as he was fooling around in the bathroom and fell hard.

i guess i was wondering if anyone else has had this problem with the back hurting and any suggested stretches, etc.

thanks Karen. Hope all is well.
When Joshua was younger he had also had a "bad back". They gave him a support band to go around his back and that worked quite well. He wore it for about 6 months and hasn't had to since. This was when he was 4 and he is now 7.
Patti, My son complains at times from back pain. His tends to be tight or pulled muscles. He takes dantrolene as a muscle relaxer. Physical therapy has made a huge difference in our case. Our PT does alot of hands-on manual therapy and what is called myofascial release. When he started out (over a year ago) one shoulder actually looked lower than the other & he could hardly lay on his stomach. We had therapy 2x week for a month or so then tapered it down to 1 x week & sometimes less. His back will still tire, but he stands straight, shoulders even and can lay comfortably on his stomach now. He doesn't complain of "pain" unless he's fallen or hurt him self some other way! By the way, we happened to find some old fractures when he was x-rayed at cinci also. I'm sure those original injuries contributed to the tightening that was pulling him out of line. Sure hope you can get him some relief!
Hi Patti,My 10 year old who is mainly in a wheelchair complains of back pin frequently - the physio said this is because his centre of gravity has changed and the lordosis is pretty bad (curvature of spine) he walks on toes with pelvis tipped forward a lot. The pain has increased with his loss of ambulation and worsening lordosis. Increased physical activity tends to make it worse,after a 4 day camping trip he couldn't move for a day afterwards as he had a "sore" back.

Jane
Has anyone tried regular massage? I haven't been on here in a while but glad to see some more replies. Traci I am going to look into the suggestions you have made. Kevin's back is still bothering him. The PT said today it's prob. because he is so tight overall. My husband feels it is the OT's fault who let him "miss" the stool at school in March. Since then it's been very tough for him with the walking. We just feel he'll get bnetter. He really doesn't have severe lordosis and really never walked on tippy toes -- his heels weren't all the way down and he tended to walk on the balls of his feet with his heels slightly off the floor. Just lately the tippy toes and he is not comfortable at all walking like that. His school PT is coming over tomorrow with a 85 cm. ball that he can lean on to stretch out his back. He liked doing that at PT last week and I think it will help. I just don't want him to have back pain -- walking or not. This stinks.

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