Am wondering if anyone else knows of a child who has this condition, believed to be the result of a "quirky" autoimmune system (dr.s words). My 12-yr.-old daughter has been suffering with this for 3 years now. The doctors are once again trying to wean her off prednisone, which is the only drug to date that has helped alleviate the symptoms and pain.
She's home from sports camp for 2 days now, as her pain has kicked in once again and we are hoping to deal with it at home as opposed to rushing to hospital, where we will wait for hours on end and most likely have her prednisone bumped up again significantly.
She's a very active and happy girl who has lots of friends and interests but I've always felt it would be wonderful to find another child who suffers from this or similar condition.
What a fantastic idea to create this website, am encouraged that other people are in the same boat, although it's sort of frightening to think how many rare conditions are out there!
Thanks for listening, hope to hear from someone...