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.
You don’t say where you are located, but my granddaughter is in the process of recovering from her 2nd bout of ADEM. She was recovering from the first one pretty well when this relapse hit. This was more devastating and she cannot walk or talk at this time. She is 6 yrs. old now. A specialist in ADEM for children is in Childrens hosp. of Philadelphia. Perhaps she might have a contact for you Dr. Brenda Banwell Neurologist. I hope this can help you in some way.
Hi David, location dependant, go to www.myelitis.org. There are not a lot of specialists that are specifically trained in ADEM / Transverse Myelitis but this site will help you heaps with info, resources, videos, some dr’s etc. All the best, Natalie, Australia.
I’ve had three different neurologists, and in my experience knowledge/experience with ADEM is less important than a doctor who will listen to you and respond. My second Neuro had her residency with patients with ADEM and other demyelinating illnesses, and although knowledgeable, she offered no therapies.
My current neuro had no experience with ADEM and only minimal info, but he’s very responsive to my questions. I now tell him EVERY thing I deal with, and I’ve been to occupational therapy, cognitive testing and therapy, pelvic floor support therapy and others. He also helps me when I ask about medicines and researches new techniques.
So in my opinion, a responsive doctor is the best option. And best of luck finding someone! They’re worth the search!
David kudos to you for being a good advocate and caregiver too!
The ADEM medical community is pretty small because it is one small part of the realm of neurological medicine. ADEM people suffer from brain injuries, and a big part of recovery is recovering from that, too.
Not sure if you are wanting more ADEM specific things or not here. Just wanting you to know that you can get a lot of value out of doctors who are familiar with the ADEM recovery traits that are common to all demylenating diseases.
In my case, my best progress was from treatments that were common to all brain injury survivors. That is my perspective here.
Hi David,
I am 3 years in with my husband and it sounds like your brother is in a similar state. I advocate for him all the time to get him in rehab so he has been in and out for the past 3 years. I wish that he would have received as much range of motion therapy as it sounds you are getting for your brother. I think most of his doctors just didn’t think his chances of recovery were good so my husband was not given the range of motion work soon enough. He now has curled toes and an arm that is stuck to his body pretty much and a lot of pain.
I would just keep asking and asking. My husband has a family doctor that is not a specialist but is advocating to get my husband into rehab. I have heard, he will never recover. He will never recover past a year… blah blah. My husband is recovering. I do not have hope that he will recover fully but he lived so we keep trying to get him to a place that he can have some independence.
The more therapy, whether it is you as a family or therapists the better. He will continue to improve with time and work.
My daughter was diagnosed in Sept of 2017, a week before she turned 30, paralysis on right side she was in the hospital 4 months in a coma 2weeks, on a respirator for a few weeks at first Drs didn’t know what they were dealing with one even told we can tell u what it’s not!! Sent her home with feeding tube and treacha she has been in and out of hospital with exasperation pneumonia each time they took trachea out, after the 3rd one Dr said it would stay for a while same with feeding tube have had no luck getting her into rehab she get therapy at home but p/T said she really needs inpatient therapy, insurance won’t pay! She has 3 little girls, please pray for us!!