My son was originally diagnosed three years ago at age 13 with idiopathic scoliosis. This fall, after much testing due to non-scoliosis symptoms, we learned that he has a chromosomal disorder, sometimes known as Klinefelter Syndrome (although he doesn't have all the characteristics of the syndrome), or more accurately, 47xxy, referring to the extra x chromosome. (He was definitively diagnosed through a karyotype, a chromosomal analysis.) I ran across a minor reference to these boys being slightly more prone to having scoliosis, but nothing more definitive than that.

He just had surgery almost three weeks ago. Some of the documentation we got upon discharge indicated a new diagnosis - now, instead of "idiopathic scoliosis" it reads "scoliosis, secondary to Klinefelters". We were also told that he did not qualify for the study he had been enrolled in because it focuses on those with the idiopathic designation, and he has now moved to a "known cause".

My question now is, does anybody know anything about 47xxy and scoliosis? Does it follow a different course - is it likely that his non-fused curves will progress? I can't find much information; and yes, I have asked the doctors but they don't know much about this condition. I was told by one doctor that it was likely that I would soon know more about this condition than most of the doctors (other than the endocrinologists who diagnosed it). Are there any other issues that might affect the treatment of his scoliosis?

I welcome any information you may have.