A.D.E.M. not so rare?

I see a lot of messages here on something that is supposed to be rare and usually hit children and usually after a vaccine or virus. Well so far my experience has been that EVERY doctor I have seen, has heard of A.D.E.M. I have been to 4 different supposedly great hospital’s, best neurologist and find they are not very forth coming with any real treatments or helping these patience’s or care givers with some real answers. from my research (which occupies my days and nights) either there is an epidemic (I know that’s a strong word) and adults are not immune. Neurologist’s wont say they “do not know what to do” and we are left to our own devices. I asked these doctors, what do we do??? my child can not function. I am given a hand shake, a pat on the back and sent home. This ADEM is debilitating, its horrific and leaves children and adults with such poor care. I am so thankful for this web site and the Myelitis foundation. I am grateful
for a speedy diagnosis. my sons lesion was quite large so I don’t see how so many doctors missed it in the beginning and were so quick to have me admit a 10 year old into a mental ward before actually looking at his brain. if I have the greatest minds and they know about ADEM. then just send us home and dispute my sons symptoms as being psychological now. I finally found one doctor who finally looked at the video I got on my phone. I asked him…“is this psychological??? REALLY??” he looked at me and said…“no, it is trauma to the brain. some heal, some don’t”. THAT WAS AT LEAST something I could at least cry to that. So if they all have seen this, and they are somehow have many patience with this “RARE” disorder…then it is not rare. it is just a secret with no one who wants get out there, get some research as many of us do and just tell us what we can do and what to expect.

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Thanks for this, I too often sit and wonder how rare really is ADEM. In the U.K. I was told the children’s hospitals see a patient with ADEM on average every 7 weeks!! That isn’t rare too me yet nobody has a clue, a care plan, something to send you home with NOTHING. We were literally discharged with no medication and still till this day 2 years later we’re told each till that unfortunately that’s just ADEM. It appears in the USA there are steroids, drugs etc. Talking of rare I know personally of two little bits within a 5 mile radius of my home who have recently been diagnosed. I do worry that ADEM is on the increase with no real diagnosis and prognosis. We waited 7 days with an unconscious little boy for a diagnosis. It just doesn’t seem right.


Yes, it has become quite alarming as to how many are being diagnosed with it but no research etc. It’s similar to how Lymes Disease is recognised and treated, or not as the case usually is. My daughter has neuro appointment at the Lister again in May and finally we have one with neuro opthomologist at the Royal Free, London, in June. (19 months later). Sadly, it is probably too late to do anything to help her with her vision problems now. But I will now start asking even more questions about treatment and research because something needs to be done as it is not so rare as doctors say it is. We patients and family know that but doctors not recognising the facts.


I thank you for all your reply’s. glad others find this just as frustrating.

It is incredibly frustrating! More often, I think they SAY they know about it but they really don’t. I’ve found one that had her residency at a hospital that does research on ADEM (in Texas) but was worthless as far as treatment plans. She’d say, “Just wait. Let your body heal.” Not helpful!

My current doctor is terrific and he’d never had an ADEM patient. He listens, researches and offers therapies we can try.

And then there’s the quack who said I didn’t have ADEM (“because adults don’t get ADEM”) but that I had Sleep Apnea!

Also, at one of the Rare Neurological Disorders Symposiums (the next one is in Ohio in the Fall - highly suggest you come if you can - you can ask the researchers and doctors directly!), they asked how many of us were sent home from the emergency room with a diagnosis of a virus/flu? Almost everyone raised their hands. So… in spite of the knowledge and research out there…

This is not helpful from me, but it’s our reality. We just have to push and advocate and question everything. I question every medicine, every test, and I go to the symposiums and ask questions. It’s the only way more info gets out there.

Hang in there - I say that a lot, but it’s true.



Thank you for continuing our battle!


I am an adult, and I feel your frustration. How old is your child?

My child is 12. he was diagnosed at 10 yo. here I thought I know he is ill, I know there is damage. No one knows how to treat his seizures because if it doesn’t show on the EEG they say it is psychological. his psychiatrist and psychologist have seen these episodes and a new neurologist has seen the video of what his episode looks like. all are stunned silent. school is just as shocked that my son is suffering so. here is what I want to know…these episodes are him gurgling and foam at the mouth. rapid blinking and moving his mouth and body thrashing all over the place, CAN HE DIE FROM THIS??? at what point do I take him again to a hospital??? and when I do, they wait till the episode is over then send us home. THIS IS CRAZY. I can tell you one doctor I took him to was a psychiatrist mandated from our school district. she explores that this might be more of a auto-immune problem. auto-immune is usually due to inflammation. I read her report over and over again. so I did some research. I started my son on some home meds. he was episode free for 13 days. now creeping back. I cant tell you how I am just scared all the time. nightmares of horror. any idea how to deal with this???

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Have any doctors said anything about him developing epilepsy? Maybe an epilepsy organization could at least help you learn how to deal with the seizures when he has one. Maybe they could help you by way of support. Lynn

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Hi Lynn, thank you for your reply. Epilepsy place has wanted to put my son back in hospital for another try on the video EEG. after so many tries, it hasn’t worked and I cant MAKE it happen. and so with my finances are exhausted and there is no guarantee it will work this time, I declined to do again. supposedly they also deal with pseudo seizure’s and disorders of the like but has told me that they will take my son on as a patient to only treat his ADEM. they will not work or help with his symptoms. The home med’s are really helping but I am not a doctor and don’t know how long or safe it is for the long term. I have him on low dose aspirin, a multivitamin with immune support, biotin, vit D, and B12 complex. with all the pills the doctors were giving him, I felt he was getting worst. now we go through days with out an episode. a new psychologist who specializes in E.M.D.R. she feels my son is NOT hallucinating at all. she said he was having FLASHBACKS. these she says brings on his episodes and it IS PART OF HIS ILLNESS. but feels this is totally treatable. we both really liked her and will start this next week. I will have to decide who will treat his ADEM at some point but I am not well myself. I think I have made myself sick with exhaustion. I think my son is now feeling better he is just sick of me…lol, I am sick of me. I want others to know that it is quite nice to know he is feeling that much better that he wants me to back off of him. I don’t know how I can do that but I will try. He still has these seizures but they are not nearly as often and he will have bad days but I can see how hard he is trying and the meds are working without a doubt. now that we are about 4 weeks in, I will call pediatrician to now see if he can give me advice on maybe safer alternatives.

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wow Henri. I understand your stuggle and I still cant believe of the 2 little ones diagnosed with ADEM in a 5 mile radius. Hope your son is getting better. My home remedy is doing great!!! everyone including the school is stunned at how well my son is doing. I just had to do something and so far so good. the bad seizure’s still are there but his mental state which he couldn’t function at all. most of them are all gone. but as soon as these med’s wear off, they come right back, so I know they are working. I just am still tweeking out how to use them. I am hoping what I am giving him, yes It helps his symptoms but will it help and heal is a question I have no answers. please keep us up to date how your son is.