I wasn't sure where to put this so I put it here.
My son is 5 1/2 year old. We went back to the Shriners Hospital for his year exam. The doctor said that his heel cords are tight. She wants to hold off on the surgery right now. She gave me a couple of excrise to do with him, make sure he is in his night braces every night and try not to let him walk on his tip toes.Which he does a lot and when he is not on them he don't walk flat footed. And she wants to see him back in 6 months. Does anyone have any advice.
Thank You

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Our son was diagnosed with DMD at 5 years. He was walking very high on his toes at the time due to his heel cords being tight. When we had him wear his AFO's everynight - within about a month, he quit walking on his toes. He is now 9 years old, wears his AFO's nightly and no toe walking. We do stretching with him, but attribute the change a lot to the use of his AFOs. His AFO's stretch his feet/ankle to 90 degrees. I would hold off on heel cord surgery if you can. Hopefully this AFOs help him.
My son went through serial casting last summer and it was very successful. He is still walking and was able to walk around the house in the casts. I would wait until you try the stretching exercises and wearing the night braces for a bit to see if you can stretch him enough that way. My son is older, he is 18 and is really stubborn and won't do any stretching or wear his night splints any more. Some of the toe walking is a compensation for their weakening muscles, it actually helps them keep their balance so it might not go away completely. I dont' know what exercises she gave you, but we had a wedge about 15 degrees, that Jon stood on against the wall to stretch, it uses their weight to help get a good stretch. My dad made it for us. Good luck.

just another quick thought, if you have any stairs or even one stair in your home have your son stand on the stair with his heel(s) dropping below the stair. he could do both at the same time or alternate, will get a nice stretch. The incline board is also a good idea. I used to have my son stand on it while he was playing a video game (provides a nice distraction). A friend built the board wide enough so that he could stand on it with both feet at once. Your PT should be able to help determine the slope.
Good luck,
Katherine

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