Acute Disseminated Encephalomyelitis (ADEM) Support Group

Something I think is for everyone here

As most of you know about my son. He was 10 years old that September 9th, 2015 when he was having from bad to worse symptoms which caused to go to local hospitals at least 6 times till my pediatrician saw it in his office, videoed it on his phone and prompted me NOT to put him in mental hospital, that we were scheduled to do that very next day. our lives were changed forever. I am writing this because I read the most amazing book that I asked for from Santa Clause. it sat on my night table all this time. I was kind of afraid to read it. I read it cover to cover. It is how a 24 year old women went through a month of madness. it is a true story. My story eerily was even worse then the book but I really think all of you will be able to relate to A.D.E.M. or any auto-immune disease. its called “BRAIN ON FIRE”.
bt Susannah Cahalan.

My sister was diagnosed with A.D.E.M about 3 weeks ago. She is 25 years old and fully paralyzed inability when she was diagnosed. She couldn’t talk and see until now. She was initially treated with high dose intravenous (IV). Then, she was given 3 plasma exchange after that she could respond with eyes. But after this treatment she is still on ventilator. Our family worried is she didn’t talk until now. Can anyone know what are the changes of recovery? Thank You.

@momof4 Wow. Thank you for sharing that.

To me it seems like the brain injury that ADEM causes isn’t discussed much here. So it is helpful to see one persona experience in that book.

@Thamarai Her recovery will continue. It may be slow but it will continue. Make sure you get enough sleep and do nice things for yourself. You will be the sweet and charming that your sister has already come to know and love.

I know my experience was a such a battle to just get someone to listen to me. My kid was getting worse EVERYDAY. new and more severe symptoms. from my research, your symptoms will be from where your lesion is. so many have this effect the spine. my son’s lesion was on the frontal lobe. I also found out that there is no test to see brain damage under the lesion. I couldn’t even get my doctors to agree that my son was having true seizures ALL DAY even though I couldn’t get them on an EEG. I think the book was telling for me and the difficulty to get a diagnosis. inflammation is now the leading cause to so many diseases. I treated my son myself. it was a longest 2 1/2 years of my (our) life. to Thamarai recovery is different for most because of where the lesion is and your age. at 25 she should have a full recovery but it does take time. I suggest that she get into a physical therapy. to Occiptal -thank you as I feel the same way. my son to this day has no memory of his illness and what he went through. My life will never be the same. anxiety and fear follow me everywhere. the book actually was a little funny to me. I actually called my doctor who found the ADEM “House”. well good luck to all.

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Brain on Fire was also made into a movie, just watched it. Reminded me of me! Except I unfortunately played my role confined to my house for several months as it was invisible to dr’s but not invisible to me. Amazing to think so many people with bipolar & schizophrenia have been re-diagnosed.

Thank you Natalie, I received the book as my on my wish list for xmas. it took me this long to pick it up. I don’t think I am ready for the movie yet. but well noted, I might be ready one day. I can only say that people in the medical community were mean. I MEAN REALLY MEAN!!! my story will come out one day. I will never be the same again.

Hello. How is your sister now. My sister aged 36 at the time of her attack in Sep 2016 was in a coma for five weeks and a vegetative state until February 2017. She emerged completely paralysed but has been making progress since, although slowly. She still has a very long way to go.

I am unable to watch Movie…help

Think I found it on a streaming channel, like Netflix, iTunes or Stan. Could possibly be for rent on dvd if you have a player?