Hi, we are an american family in New York, our son Matthew started to limp one day after returning from school, we thought it was from him playing in gym class, maybe he pulled a muscle. Well, days turned into months with this limping, so we took him to the pediatrician to see what was wrong.
They sent him for x-rays which showed nothing at all. Then they sent us to a pediatric orthopedic to see what they thought of this unexplained limping. They thought right away that it was perthes disease, and sent our son for an MRI Image, this came back positive for perthes disease.
He had to get onto bed rest because his range of motion in his leg was very bad, it was not moving properly, so one week he stayed on his bed faithfully, and upon returning to the orthopedic, his range of motion was great again, not 100% but much better.
So they said to come see them again in 3 weeks, so we did, and this time again his range of motion was very bad. They ordered him to have one more week of bed rest, this time he would not rest, upon returning to the doctor, his range of motion was still bad.
So he ended up in the hospital in traction for one week, they told us he could have done this at home, but it is very hard to keep a 5 year old in bed, so what they were litterly doing was tying him up in bed in this traction.
After one week his leg was good again, the problem being that he looses his range of motion so fast, and it is very important for the leg to be moving properly in order for it to heal properly.
We went back again in 2 weeks to the pediatric orthopedic, and she suggested a abduction brace for him, this would be bars down both sides of his leg, and a big belt around his waist, and leg cuffs on his thighs. We were very positive that this was our answer for our son to keep his leg in proper position, and to slow him down with this brace so that hopefully he would not damage his leg any further.
They fitted him for it, and we went back after a week to get it put on him. Well, when we seen what this contraption looked like, and after we seen how far apart his legs were, we spoke to the doctor more about the brace. She could not promise us the outcome after he had worn this brace for one year, it might be just a beneficial to do surgery, casts, or nothing at all than by using this inhumane devise. She could not tell us for sure if that brace would do anything other than slow my child down. We had taken our son out of physical education class, and do not allow him to jump on his leg, and no running. It seems by keeping on him about running and such that he seems to be keeping his range of motion. So we refused this brace, because we feel that we are accomplishing the same thing as this brace would, by keeping him quiet.
It all has been so confusing, no one knows much about this perthes disease, but from others that I have talked to , tell me we are half way there, just by knowing what our son has. Many children are undiagnosed and this is devastating to the family.
So we are just keeping our son on rest, and keeping up with his visits to the doctor evry 3 months, and at that time the doctor does a new set of x-rays to see his progress. We think that his leg is not as bad as some of the children that we have spoke to. So hopefully next visit to the doctor will show an improvement. Only time and x-rays will tell.
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