This sounds just like my son! My son was diagnosed 2 months before his 7th bday in 2011. He was playing competitive soccer and always active - textbook typical case. Started complaining about knee and shin pain, and the 2nd dr.'s appointment caught it on x-ray. Our first doctor was trained at Shriners, so my son had the tendon release surgery and was in a cast/brace for 6 months. Fortunately, we had to switch docs due to circumstance and once we were "officially" that new doc's patient, she too said that the crutches and wheelchair were delaying progress and she wanted him up and moving. She said there is no proven better outcome for kids treated one way vs. the other and she'd rather get the hip moving. However, while he was in school with a wheelchair (we actually had to switch schools during this) I was really nervous how the other kids would treat my son. I am so thankful to have learned through this, that kids are typically very caring, and they all wanted to help him. I had him do the summer program at the new school so that he could get used to the new place and the kids could get used to him. We found out 1 week before school that the doc wanted him off crutches and out of the wheelchair. He was supposed to "wean" off crutches, but he never used them again from the moment we left the doc. We did 6 months of physical therapy 2x a week and then 1x a week. We are now 1.5 yrs post diagnosis, and are in the fully collapsed stage. My son has no pain, has a very small limp that most people don't notice. We do streches at home. He is not in any organized sports yet, but we pretty much let him do whatever he wants to at home. We have our first x-ray since January this week. Hoping that we are in remodeling/healing. This disease is very exasperating, but I am very thankful too that it is temporary. Hoping that you all have speedy recoveries!View Thread
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