I've been sending queries out to various ADEM researchers. This is the only response I've received so far. As always, check with your doctor about treatments, but I'm just trying to share what I find out.
"I'm sorry that I do not have much to tell you. Acute disseminated encephalomyelitis has been difficult to study from a clinical perspective because of its rarity. There are two separate issues from a research standpoint for this disorder. The first is how to initiate treatment at the earliest possible point to minimize residual disability from the acute attack. Unfortunately, in the United States, the diagnosis and treatment maybe delayed by several days to weeks or more leading to a less than desired response from the available therapies. In addition there is not a consensus in the medical field as to the best first approach to management of this disease. However, we actually have effective tools that if combined with a campaign to bring awareness to this disease so that earlier diagnosis can be made and treatment initiated we could substantially improve outcomes in a very short period of time.
The second issue is how to facilitate more recovery of neurological function. Actually, there has been a number of advances in this area that are relevant ADEM. Of course, there has been much research done on stem cells but I do not see evidence of their yet a viable strategy for repair of the nervous system. More encouraging is research on repair and remyelination using various medications that may be available in the near-term. This includes a report from France on the use of biotin to improve functional recovery in patients with progressive MS. The problem in progressive MS is actually quite similar to the problem or ADEM in terms of recovery of function. Statins, miconazole, clobetasol, and other molecules have been suggested to have a possible role in neuroprotection or remylination in inflammatory diseases of nervous system. It may be, that a trial of biotin in patients with ADEM would be appropriate at this stage given the results in MS. Arranging such a study I believe is doable in ADEM today with the advocacy organizations that have organized individuals that deal with this disorder.
I'm sorry I do not have more concrete recommendations to make but I would suggest considering advocating for a study of BIOTIN in people who are already exercising to the best of their ability. "
If you have any info about anything he's suggested, let me know - Let's just keep sharing info!
LauraK