Janis
My Ehlers Danlos was not diagnosed until I was 42 years old and I have to say the biggest regret I have is not being diagnosed as a child. I truly believe that early diagnosis would have saved me from many of the problems I have today. Primarily the TMJ (tempomandibular jount or jaw) I now have a completely displaced jaw and have spent over $10,000 in 2 years on dental work and splints to relieve the pain. I also wonder if I would be suffering as much today in all of my joints had I known what I had early on. My advise to you as parents...don't over protect your child by not letting him participate in sports, but do make sure he has the appropriate supports and training to keep his joints strong and in place. I had so many injuries that I rarely completed a season, but I don't regret being out there...I just wish I had had the appropriate support to prevent some of the injuries. I am now, at 43 paying the price for those injuries. Also, I am one of 4 children...the youngest...and the only one with EDS. I don't know that there are any guarantees, but those are pretty good odds. And as far as ailments go, I consider myself lucky that it is only EDS!!! Hope this helps and good luck.