I’ve seen a number of posts looking for info on Drs who are ADEM specialists. I’m looking recommendations for Drs who specialize in the rehabilitation and recovery of adult ADEM patients.
My brother was 28 when he was diagnosed with ADEM. The disease hit him hard and it progressed quickly (from onset to a coma and on life support in about 3 weeks). He is now just over a year into his recovery. He is conscious and aware (it seems his cognition is fine) but is unable to talk. He can hold his head up and look around. He has very limited movement in one arm (can reach up and scratch his nose).
He is currently in a long-term care facility. We’ve hired our own physiotherapist to work with him. My mom supplements her work with three physio sessions each day (mostly range of motion stuff). We trying to get him admitted to a rehab hospital but his Drs keep telling us he isn’t ready. They might be right, but there are stories on this site and on a Facebook ADEM group I am on that suggest otherwise. It would really help us advocate for my brother if we were able to consult with a Dr who specializes in the rehabilitation of Adults with ADEM. Any recommendations would be greatly appreciated.