My daughter is 6 and has trouble walking from her HEDS- related ankle pain. Often days she won't walk and begs not to have to go to school. The rheumatologist and orthopedist told me today that pain is not usually associated with HEDS and they are shocked to see her in such pain. They didn't say they disbelieved her, they more made it sound like a total medical anomaly. Especially in someone so young, they seemed incredulous. I know they're wrong about not associating HEDS with pain, but does anyone else have experience with such a small child in such pain? What helped?