I'm so thankful to have found this page

Hi everyone. My sister, who is 31, got diagnosed with ADEM 1 week and 1 day ago... and it seems like a lifetime ago. She's still sedated and we are all still playing the waiting game. It's very scary and came out of nowhere... I'm sure you all know the feeling :(

Hang in there. These are the worst of the days. Feel free to post questions, concerns, frustrations, etc. We'll share our experiences to hopefully alleviate some of your fears.

Good luck,


My son is 10 years old and only 8 months post ADEM. I agree these days are the hardest. All the whys and the unknowns. Not even the drs can tell you how long will it be. Some Drs can be harsh, at times I had to take them out of the room because my son was listening to everything and I knew it was better he didn't know. One even said: "it will get worse before it gets better" and thank God he was wrong. Have a lot of faith and celebrate every accomplishment no matter how small it seems. it is a long road to recovery but with excellent outcome.


And please: don’t forget your nephew and brother in law. And keep assuring your sis that they will be taking care of. If she can not express herself, please keep on informing her.
Although I was worried about myself those first weeks, I was far more scared that I couldn’t take care of my children. This ‘mummy concept’ goes so deep and she may need your trust.

How long did it take before you “woke up”? I know that recovery can be a long and intense process. I believe that she will have a ton of support but I think we will all feel better when she is awake and responding to us. I know every case is different but can people share the amount of time with me please?

I opened my eyes and tried to communicate after a week, but actually waking up as in coherence probably took a few weeks.

My son started just like your friend just wanted to sleep all day he complained of headaches a few days before the sleepiness and them just tired more like exhausted. On the 1st ER visit scan normal they said it was dehidration n was sent home only to get worse and very quickly. He was never unconcious just tired sleeping a lot but alert when he was awake. In 8 days we were out of the hospital. Walking, eating and speking a little slower than usual like he could’t open his mouth and it would get full of saliva but within two week it was normal. Hope it happens soon for u guys.

yes, I went to bed one night, couldn't move when I woke Up-I rolled off the bed, and called a friend to take me to hospital. was in hospital twice, doctor said there was nothing wrong with me on second hospitalization. Couldn't sit up without severe headached for 4 months. Missed a semester of nursing school. sheryl

I'm sorry you're still playing the waiting game, it's the worst!! Hope your sister can have a full recovery. I hope you have really great doctors who will take this all very seriously and help you all stay educated!! Be thankful for the diagnosis- it's better than playing a guessing game! they know what they're up against!!