Acute Disseminated Encephalomyelitis (ADEM) Support Group

ADEM in 69yo Female- Help and Advice

Hi everyone, my mum 6 weeks ago complained of severe back pain. She went to the hospital and they sent her home with panadol. The next day she felt ‘off’ and went back, they assumed she had the flue. Two days later my sister demanded that the doctors do something (by this point my mum had no bladder control, sensitivity to light, and was screaming in pain). They did a lumbar puncture and sent her to another hospital /ICU. She was in a coma at this stage and on life support. She was treated for bacterial and viral meningitis. Her lumbar puncture came back negative and her MRI had multiple lesions all the way to the thoracic spine. We were told at this point that she most likely would not make it or would have a low quality of life. They then thought it may be autoimmune and tried steroids and IvIg. She opened her eyes a little. They then transferred her to another hospital/ICU and have her plasma exchange. She could then squeeze my hand. She had a brain biopsy but everything came back negative (no bacteria or virus). They then decided it was ADEM- a spontaneous case. After 4 weeks she is now awake, can talk, relearning to walk (just a little wobbly), can read, hear and see and is breathing on her own. She also is going to the toilet by herself (no catheter etc). But she has severe Delirium- nightmares and déjà vu. She is confused and having short term memory issues. She also is very highly emotional, and not being very cooperative. Her personality is somewhat different. What I am scared the most of is that the delirium won’t go away. Did anyone else experience this? She has been awake for almost 2-3 weeks now but the delirium is still there. She is not engaging in much conversation and she also hallucinates. Thanks everyone in advance. My mum was extremely healthy, happy and independent before this.

She actually sounds very lucky, all things considered. My 7yr old son was not so lucky. For her to regain so much so quickly is a great sign. Those weird personality things should subside over time. I think she has a good chance of being “normal” again. Sounds like they did the right treatments just not as quick as we would have liked. But ADEM is rare and hard to diagnose quick. I think you guys will be ok.

Dear Sarah - I am so sorry you and your mum are having to go thru this experience. During my 50 y/o sister’s 3 month hospitalization last year from ADEM (I have most of her story in my profile), she never had any delirium once she came out of her nearly month long comatose state. A year later she still isn’t having any of these symptoms (other than getting tired more easily). She was fortunate in that it appears that there was no brain damage from the ADEM swelling.

Part of my sister’s follow up care once she came home was to get an MRI done and review results with her neurologist (I think every 3 months).
I am so happy that your mum has mostly come thru this. Throughout this whole scary hospitalization, we were told that it would take time for the swelling to come down and that they wouldn’t even know the extent of any damage, if any, until it did come down. Again, thankfully, after the 3 month hospitalization, it appears that there isn’t any damage. You should certainly check with your mum’s neurologist. It just may be that it is a symptom of residual swelling - and that it will resolve as the swelling continues to go away. I read a little bit from a Harvard article about how inflammation can cause delirium. Here’s an excerpt from the article: “Anything that interrupts normal brain function can cause delirium. Inflammation or toxic substances can interfere with brain function, for example, by disturbing the neurotransmitters that communicate between nerve cells.” Here’s a link to the article: https://www.health.harvard.edu/staying-healthy/when-patients-suddenly-become-confused.

You and your mum are in my prayers. I pray for her complete recovery.

All the best…Brad

Thank you for your encouragement, at times I forget how far she has come. I’m hoping she will get better and continue to improve in time!