Acute Disseminated Encephalomyelitis (ADEM) Support Group

ADEM and coma

Hello from London England

My best friend was diagnosed with ADEM nearly 5 weeks ago. When first admitted into hospital she was still able to communicate slightly but over the course of the next 3 days her state deteriorated and she ended up in a coma and was moved to the Intensive Care Unit. She was started on corticosteroids, antivirals and antibiotics from the first day she arrived at the hospital and eventually had to be intubated to help with her breathing when she eventually slipped into her coma. After a week or so in ICU a tracheostomy was performed as this was easier to deal with her secretions/saliva and lack of swallowing reflex. She was in ICU for nearly 3 weeks and underwent plasmaphereris and immunoglobulin treatments. She had an issue with temperature spikes (a max of 39 celsius recorded at one point) over a period of 2 weeks or so and had very obvious hot flushes. Eventually she was moved out and onto a neuro ward nearly 2 weeks ago. So far no infection or virus has shown present in any of the cultures undertaken. She has had several CT scans which have shown several lesions in white matter of brain and inflammation in brain stem.

She has now been in a coma for nearly 5 weeks and I was wondering if anyone has had a similar long wait for their loved one to wake up? I haven't come across such a long wait in the stories I have read so far. I know every case is different but this length coma does worry me and seems atypical maybe? Any similar knowledge or personal experience would be welcome and in particular any details available of recovery after such a length of coma would be helpful.

I saw her today and it seemed that when I opened her eyes for the first time she really moved her eyes and looked at me directly and actually seem to "see"me....if that makes sense....

Thank you for sharing any experience you may have,

Kitty

Hi Kitty wish I could help my son's ADEM is very severe but he was not in a coma. Healing takes plenty of time. I remember as my son's condition got progressively worse during the first week. He would just stare into empty space and looked past us. Hope she gets well. Sending you positive energy and praying for continual healing.You can read about my son's case on the members page under my name if you are interested.. All the best to you at this difficult time in your life.

Kitty, my husband was in a coma for about 6 weeks. He is slowly progressing. And yes it makes total sense. Please let me know if I can be of any support. Always remember that YOU know her and you know what her eyes look like and what the expressions mean. You are in my prayers.

Hi Kris thank you for your message. I saw my friend yesterday and there has been quite a bit of progress in the sense that she is now opening her eyes fully by herself. When I entered her room yesterday she was "watching" TV.... She has however an odd habit which consists of her looking up and staring at the ceiling for 10-15 seconds or so and then refocusing on the TV screen. This happens every 15 mns approximately. It nearly feels like a "reboot" for lack of a better word. Has your husband had anything similar?

I was with another friend and she did look at us a few times but there seemed to be no recognition or acknowledgment of our presence. Although the eye opening was a positive step for sure, I left the hospital feeling very conflicted. I just found it so hard that she was awake but not "there". I am truly hoping that she slowly comes out of this vegetative state and becomes more conscious and aware. Currently she does not communicate whatsoever or respond to commands. Has your husband managed to communicate in any way with you? How long did this take I am wondering? It seems that your husband and my friend have had a similar experience especially the length of coma. Could you describe his physical state? My friend does not really move at all by herself. She shows signs of decerebrate posturing still and has small seizures which show mainly through tensing in her arms. She is medicated to keep these fits under control.

I am of course relieved that she is out of her coma but can't help wondering what the future will bring. I hope that soon she will show some signs of connection and communication.

Thank you again for your prayers and kind words. I too send you all my most positive and warmest thoughts during this challenging time.

Kitty.

This is so similar to Robert’s illness. Robert did the same thing and it was a very very gradual awakening. Right now Robert only communicates with nods and he will mouth a few words but no sound. He very slowly regained some movement. He has so far to go, his attention span is very limited,but there is hope. What treatments has she been given?

My son only recognized us after about 3 months. He initially recalled us as "my family" when a nurse inquired who we were and then later on he knew I was his mom. This illness is really a lesson in patience. But healing does occur just very slowly. My son had his attack April 2015 and attention span is still an issue but he has to read according to the neurologist to make the reconnections. They have just prescribed Ritalin to help with his attention span because he does not have an interest in learning anything. I watched a interesting documentary on Netflix entitled "My beautiful broken brain" - It is about a lady that had a brain injury because of a stroke. It does give loved one's and caregivers some insight as to the reality of a person with a brain injury so we can better understand what they are going through.

Hi…
My daughter’s conditions are about the same, the difference is hers is relapse.She has been in hospital since 9 Feb…still not much improvement.Her Dr is treating her as ADEM.
She has ivig ,plasma exchange and one dose of chemo drug cyclophophamide not much improvement
brain biopsy was done to investigate further and Drs in Singapore not able to have an definite diagnosis,sending to University of Luke for consultation.
Her Dr is thinking of giving her 2nd dose of cyclophophamide…Really the recovery process in very slow…though she’s not in coma but her whole body is stiff, with the tracheostomy she can’t make sound…it really hurt see her suffering…

Hi Sarah

Thank you for the recommendation, I will absolutely look for it. I have watched quite a few medical and personal videos I could find on youtube (the HBO Coma program was very informative but quite tough to watch I will admit). I too strongly believe however that informing ourselves as much as possible and sharing is key to getting through this. Knowledge is most definitely power! I feel i owe it to my friend to fully understand as much as possible so I can help her in her long battle ahead. I also understand that she probably has a dual battle in a way: Recovering from the coma and from ADEM. I must be careful to keep the two distinct, am I correct?

Thanks again!

Hi Kristy,

I'm very sorry to hear of your daughter's pain. It must be very difficult to see her this way. I fear that once my friend emerges she too will show sign of suffering. It is an unknown quantity at the moment as she is awake but not conscious yet. I was curious to understand the chemo treatment you mentioned. What is the purpose and how is it suppose to help specifically? I am not familiar with it at all.

I am sending you my warmest thoughts and urge you to stay strong.

Thanks for the response it is greatly appreciated. To date since my son was diagnosed in April 2015 he has had 5 chemo treatments. He had 3 Cytoxan (cyclophosphamide) and 2 Rituxan. His Adem was very severe. The steriod treatment and the plasma exchange did not stop the lesions from growing. Chemo kills cells that replicate very fast and the chemo treatments stops the lesions from growing in the brain. He had very high doses of chemo and the first 4 were done 3 weeks apart. After every MRI was evaluated it showed that the lesions were still active, this is why they continued the chemo treatment. The last chemo treatment Ritaxan was done as a preventative measure to prevent a relapse. When his blood work came back it showed an elevated white blood cell count which is an indication that the body is fighting an infection. The plan for the next five years is chemo treatment every six months to prevent a relapse. It is also my understanding through various research that ADEM is monophasic but in very rare cases a relapse can occur. It is therefore, important to strengthen the immune system through proper nutrition and exercise. I try and include plenty of anti-inflammatory foods in his diet. Our neurologist also recommended by son take the flu vaccine (I know this is controversial) to prevent him from getting the flu. ADEM is an autoimmune disease. The body starts fighting the flu but then continues to attack the good cells in the body too and hence an ADEM attack. Hope this helps. The following links explains this very well.

https://www.youtube.com/watch?v=BlrUFOj57Lk

https://www.youtube.com/watch?v=gvbgeqJv-2Y

All the best to everyone dealing with this illness.

I am not sure about the coma and ADEM recovery. The individuals in the documentary had a Traumatic Brain Injury (TBI) and ADEM patients have a Acquired Brain Injury (ACI). Looking at the documentary "COMA" on HBO reminds me of son's recovery. It did make me feel better because it reminded me of where my son was. He could not walk, talk, feed himself and would just stare into empty space and did not know who we were. We have come a long way since then. He does 20 000 steps a day. Feeds himself and starting reading. He was a chemistry major and when I ask him to read a word from the periodic table he would tell me correctly what the the Atomic number and symbol of the chemical is. His long term memory is better than short term memory. Progress is slow but there is progress. I remember in those early days how positively he responded to music. Let your friend listen to music that she liked listening to. Also tell her everyday that she is getting better. It is important for her to believe that she is getting better. I normally prayed and told him everyday you are getting better. Be as positive as you can be around her. There is an interesting book I am reading "You Are the PLACEBO, making your mind matter" by "Dr. Joe Dispenza" It is talks about how belief can change your outlook.All the best to you and your friend. I will remember you all in my prayers.

I also know with ADEM there is damage to the Myelin sheath and not the actual brain. And the myelin sheath does repair.

Hello,
My Daughter is 24 years old and she has been here at the hospital since July 1st 2016, its now 2 months of being here. They thought at first she had MS now its ADEM, we are awaiting for her brain biopsy to get back from stanford. My daughter started out just with confusion, not knowing who we were, then it got to where she was unresponsive, then with the steroids IV she started knowing who we were, feed herself and then 2 weeks with this. she went back to unresponsive, heart rate was really high, they have been doing steroids, two other treatments that have not worked, Saturday the 3rd of sept my daughter coded and is now in ICU, they are doing plasma fereses for 6 days. we have never heard of this ADEM and it scares us, we pray she is going to make it back to us and her children.

Lagerton1,
I’m sorry to hear all this. Are any of her doctors familiar with ADEM and have they explained anything about ADEM? We can post links and we know of a video that is very good and fairly well explained. Lynn

Seems to be a learning process here in Reno, NV. Its rare so they say, i would love to have her sent to stanford but we are thinking it may be to late to do this move for her. still waiting for results from biopsy.

Please watch the following documentaries on U tube. They explain ADEM very well. https://www.youtube.com/watch?v=BlrUFOj57Lk AND https://www.youtube.com/watch?v=Y2zvGGDKh2w. Hope this makes it easier to understand. We had our son moved to a University hospital with no regrets. The first hospital wrongly diagnosed him with PML (JC Virus) and said he had about 4 months to live. My son’s ADEM was diagnosed April 2015 and the lesions only stopped growing in November 2015 based on MRI results. We did steriod treatment, plasma exchange (7 treatments), 3 Cytoxan chemo treatments and about 4 Ritaxan chemo treatments. We continually had to insist on MRI results to see if there was progress. In hindsight we are not regretful as the biopsy done by the neurologist from the previous hospital had caused my son’s brain to herniate causing pressure on the brain due to fluid retention. He had not closed the hole he created in the brain and did not close the duraflap either. The University hospital then had to do a Craniotomy where a titanium plate was placed over his skull. This resulted in a delay in his chemo treatment because he first had to recover from the Craniotomy. Every case is different though. I just mention this because I think we have to be our own advocates in order to receive the best possible treatment. She will make it back but it is just going to take time.

Sounds like me.
I’m in the South of UK by the way. I lived in London for 20 years.
I was in a coma for 3 weeks.
PM me if you like and we can chat.
Lou x x

OMGoodness, this sounds like my daughter Danielle. all of this has happened to her even the treatments. Danielle is awake i do believe she can see and hear us, but how much is unclear. She moves her forearms up but her fingers are still clinched shut. Renown had sent my daughter to Stanford to find out what was wrong because her case is so siever the doctors were playing a guessing game. She was finally diagnosed with Susac Syndrom a autoammune, She has been moved to long term care Tahoe Pacific Hospital I pray she has a full recovery. My prayers go out to your friend and the family, I find myself crying everyday over this horrific illness.

Hi Everyone,
I thought an update would be interesting for everyone. My friend was moved in August to a Neurological Hospital. Over the past 3 months very small changes have occurred. She is definitely more aware and seems to attempt to communicate by blinking ( for yes basically). It is hit and miss but we are working on her hands more to try to get signs which are easier to understand. She has given me the odd thumbs up on command but not for answering questions. She will not nod yes or no unfortunately. So communication is still very difficult. She is still bed or wheelchair bound. Her hands are still quite curled although they are much more relaxed after some massaging. She can also squeeze our hand with hers on command. She has improved I think mainly thanks to the hydrotherapy sessions she has been having. Last week for the first time she moved her foot on command for me. Her arms and hands are definitely much improved. She is still struggling with her swallowing reflex and her saliva and therefore she is still fed by a PEG. The hospital recently attempted to give her a very small amount of food followed by an endoscopy and it was determined that the food was not going down the right way sadly. She has also started to smile quite regularly which is an incredible sight!!! There are some definitive positives but the road ahead is still very long. Today she was moved again to a Specialised Neurological Care Centre. This new place uses a lot of different types of physio and seems to have a more holistic approach to care in general. They have their own hydro pool too which is great! She will finally have her own private bedroom instead of sharing a ward with 3 others which I think will also help as we can personalise her environment and make her feel more at home. So 8 months down the line we have some small progress but it is extremely slow and we are still unsure of what her long term outcome will be. I am trying to remain optimistic but the reality is that unless something dramatic now happens in the new centre she may be years away from a full recovery, if that is even possible at all. Things have been tough and it breaks my heart to see what this terrible illness has done to her. But I’m not giving up hope and I am intent on staying positive. It’s the only way to be! I wish everyone going through this hell courage and strength. And Patience!!! Patience is key. Much love to all!

I’ll keep praying for you all! What is her first name?