My heart goes out to you. My family has been right where you sit. Keep fighting for your husband. I do not know the ends and outs of what is going on, or how long it has been or what treatments he has had..but the recovery from this is a long one. AND REQUIRES aggressive treatment and lots of rehab.
My sister came down with the flu in early February and was diagnosed with ADEM a week later. She was in a crappy hospital in San Antonio, and her Neurologist told us that she most likely would not get any better. He refused to administer plasmapheresis. WTF?!?! The only thing that she could do for herself was breathe! This was an unacceptable answer!
We fought for her, moved her, insisted on IVIG and when that did not work we insisted on Plasmapheresis, which was the last thing to try, and she began to come out of it almost immediately, but in super tiny steps. It took weeks, and it was agonizing to wait for it. When she started to move her fingers and look around, we moved her Texas Neuro in Austin, Texas. After that she went to CORE in Dripping Springs.
It took from February 2015 to After Christmas 2015 for her to recover enough to move into her apartment alone. She isn't 100 percent, but she is 90%! THERE IS HOPE! No one thought my sister would make it--and she did!!! She is 54 years old.
SO--Take Care of Yourself. Keep your Energy Up, EDUCATE YOURSELF, as you will need it to battle the DR's, the Insurance Companies.
Best to you and your husband. I will have you both in my thoughts and prayers.
This is a great article:
Spontaneous improvement has been documented in patients with ADEM. However, the recovery is incomplete in patients with ADEM not receiving any form of immune modulation treatment. No therapy has been established by controlled trials in ADEM. Use of high-dose steroids, plasma exchange, and intravenous immunoglobulin are based on the analogy of pathogenesis of ADEM with that of MS.[35,36]
Treatment of ADEM includes: (1) supportive, and (2) specific—high-dose intravenous methyl prednisolone, intravenous immunoglobulin (IVIg), and plasma paresis, and (3) physical and rehabilitation therapy [Figure 1].S