Hello! I am a new member to this group.
We are desperately looking for help for my
brother-in-law, a 65-year-old who has been
diagnosed with ADEM. Robert’s condition began with near-total paralysis. He is currently in the ICU in Palm Springs. Initially, he was treated with antibiotics, to rule out any infections. Then he received corticosteroids, IVIG, and plasmapheresis,
with little improvement. As of now, he’s
getting no further treatment. He has a little
movement in his right hand but
that’s it. He’s on a ventilator and has a
tracheostomy so no liquids or food and he
can’t speak.One week prior to his getting sick, he
received a pneumonia vaccine. He lives in California, with no spouse or children. The rest of our family is in the northeast. After a few neurology consultations, we are trying to find a neuroimmunologist who is
willing to review his case to advise if
anything else can be done.
We are extremely desperate at this point
and would appreciate any and all advice. 
Hey AnnMarie,
My name is Merl. I’m a member of the Modsupport Team here on Ben’s Friends. My SIL had M.S. so I have a little knowledge of ADEM via research for her. Personally, I have a growth in my brain and have been put through the roundabout of dr after dr after … repeatedly. And as a result have some experience in dealing with the realm of neurology and neurosurgery
I’m in Australia and have very little info in the way of how the U.S. system works, but here, trying to get to a specialist, such as a neuroimmunologist, is often a long drawn out process of pcp to specialist (Neurologist) to a refined specialist (Neuroimmunologist). The appointments for each can be months apart when what you need, you need now.
I say all of this because when I search in Palm Springs I can find neurologists, very little that’s specific to ADEM. Going a bit further a field there are some more specialised clinics such as Cedars-Sinai in Los Angeles
Multiple Sclerosis (MS) and Neuroimmunology | Cedars-Sinai
and Stanford near San Francisco. Some may also have online consults available
Stanford Multiple Sclerosis and Neuroimmunology Program | Neurology & Neurological Sciences | Stanford Medicine
Both of these facilities have specific neuroimmunology clinics attached to their M.S. Depts. I’d suggest you would need a referral from a neurologist, but if he’s already in treatment under a neurologist a referral may be easier to obtain for a review.
Here I know the universities run research and pilot programs, many with the most up to date, cutting edge technology attached. Often they also have their own networks of varying specialisations/therapies which may assist.
Hope it’s of some assistance
Merl from the Modsupport Team
Thank you!! We have found a neuroimmunologist at Cedars-Sinai who is willing to review Bob’s case. She has requested additional MRIs on the brain and spine to see if inflammation is active currently.
Good luck to you, and thank you for the support!
Hi AnnMarie, I am very sorry to hear about your brother-in-law. I hope you can find the treatment you need at Cedars-Sinai. ADEM is one of many autoimmune diseases we track, but we collaborate with a number of facebook groups that might also offer help. Please visit our website at www.autoimmuneregistry.org and in the disease list you will find more information on ADEM.
Aaron Abend