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.