I would tell you that finding a good neurologist has made a difference for me. My previous one (in another city) knew about ADEM but offered nothing other than drugs for my rehab. This new doctor knew little about ADEM, but he has sent me to so many different kinds of physical therapies, and that’s made a world of difference!
I will add Natasha and your family to my prayer list along with everyone else. This horrible disease is so frustrating, and we have to be our own advocates to get ANY help at all. (Currently I’m fighting insurance which doesn’t want to cover the massive cluster headaches I get courtesy of ADEM. So I guess they’ll just pay for the ER visits instead…)