Acute Disseminated Encephalomyelitis (ADEM) Support Group

Children waking up from a coma - experiences?

Dear Members, my 5-year old niece has been suffering from ADEM for a month now. She spent four weeks in a coma on life support and was sedated for seizures. Currently, she she can breathe on her own and can open her eyes, but the problem is now that she is not ‘present’ yet.

We are now concerned as they say she is not in a coma because she wakes up and opens her eyes, but she is not conscious.

MRI brain scan on the first day was regular, a week after showed multiple lesions and now a month after showed some joined lesions.
Now they want to attach a feeding tube directly to her stomach as she doesn’t swallow and eats very little through the current tube.

We are all frightened. We have read a number of articles and posts, but we couldn’t find anything about the outcome in this case: coma - waking up - woken but not conscious. Can we hope for a full recovery? If there are parents who have been through a similar situation, we would be so grateful to hear how it went with their children, so to know what to expect next. It is soothing to see a community like this. :pray:

1 Like

Hi
I’m so sorry to hear your going through this.
My little boy was 2 and a half when he was diagnosed, he was put on steroids which weren’t doing a lot so he was ventilated and sent to an intensive care unit in another hospital. He was unresponsive through this. He was given an plasma exchange which he started to open his eyes few days after but he was in a similar situation at first, his eyes were open but not really there. He was kept on the steroids and given another plasma exchange, we just kept talking to him and reading him stories hoping he would hear and remember some of what we were saying. After another few days his eyes started to focus more on and off and when I read one of his stories his mouth started to move (he always used to laugh at a certain bit of it) I was convinced it was a smile but I was told not to get ahead with everything, but he did start to focus more and was taken off his ventilator after a few more days. There were some days when he used to drift and it seemed like he wasn’t with us but the dr told us he would expect to see progress and regression.
He did carry on picking up and was moved to HDU then onto a normal ward. He still couldn’t walk, sit or talk at this point but he did improve slowly and one of the days his baby brother came to visit he just looked at him and asked what he was doing, his speech slowly started to come back, it was very slurred at first, same with his movements, he had a feeding tube still through this. he started to get a bit stronger and had physio, was very wobbly and tired in those weeks but he did slowly start to get back to how he was before.
Sending lots of positive thoughts to you, I know it’s the hardest thing but keep thinking positive xxx

Dear Raych33, thank you very much. The case indeed is very similar. I am so happy to learn that your son got well. It is a bit easier to breathe now when we know that it is recoverable. The fight continues. Best wishes from us.

I remember thinking and feeling exactly the same and just looking for answers which no one seemed to have. It’s a long process but try and stay positive. Sending lots of positive thoughts xxx

Hi Dzenana, how are things with your niece now? Hope she is much better now?