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HI! I am hopeful that somebody on these boards can give us some information about anyone they have known who had scoliosis so severe they required surgery. We just got the news about our son, age 16, that he has a 78 degree curve and if he doesn't have surgery, he will eventaully not be able to breathe. We have known about the scoliosis for some time, but it recently progressed quite fast. The problems are:
1.he had opean heart surgery at age 8 months and we don't know if he can even be approved for surgery
2. the pediatric orthopedic clinic in our children's hospital has never done the surgery on anybody with Down syndrome.
3. We knew in advance that for some reason this is a rare condition in kids with DS, so how to we find somebody who might be more informed?
4. Anybody had any experience with the Shriners Hospitals?
