Congratulations on following through to diagnosis! If you are unsure of the diagnosis, the doctor can tell you why he came to that conclusion, and how sure he is. One thing you can probably be certain of is that he does have SOMETHING in the connective tissue area. When I was in the pediatric developmental disability business (15 years ago- so things have changed), it was not uncommon for children to switch diagnoses as things became clearer. And if your son is mild, it does make it harder to diagnose, which is a good thing!
You now have a diagnosis that school may have seen before but certainly cannot dispute and must accommodate. Anytime any para is reluctant, you can distribute all kinds of scary literature about how damage can be done by pushing too hard on hypermobile joints and how strengthening must balance and stabilize the joint, and hopefully there will be no more trouble! Is it too much to ask that they apologize?
Thanks MON. Yes, the doctor is very qualified and she is sending a detailed report about her findng and how she came to it - also a report that I can give the school
... That is a definite plus - a highly qualified and credentialed CHOP specialist has diagnosed him with a real diagnosis.
I just personally wish there were a genetic test. The more research I do on it, though, the more it does fit quite well. The doc mentioned that there's no genetic test for it unfortanately (not for my son's type anyway - I think there are for the two much more serious types).
