My little 4 year old boy is 5 weeks post ADEM diagnosis. It started with drowsiness and vomiting and we noticed a facial droop and unsteady walking. A&E sent us home saying it was viral and we were in and out 3 times in one day before he was taken serious. He had 3 MRI’s, Lumbar Puncture, EEG’s, so many tests, and was treated with steroids. He is making a good recovery but gosh, I’m so so scared it could happen again…
I am sure that time will be a good healer and and longer that he manages without a relapse the better we will feel but it’s such a scary time ahead and I can only feel worry and anxiety at the thought of him even catching a cold
Hi Laura, my boy is 9 years old and 3 months post ADEM and we had the worst time of our lives. I can tell you that the fear of him getting sick has gotten better and thank God he is doing great. He even had a cold and as usual he gets rid of it in hours while I get it for weeks so I do think he is back to normal. As scary as it is I can tell you it will be fine. I understand exactly how you feel. Stay strong. I find strength in the positives. My son did so good we were so lucky it could have been so much worse. He is a fighter and your son too :) Keep us posted and if you have any question we'll be here for you.
Laura, our children are amazing healing machines. We are 10 months into our recovery and Headaches and exaustion are his main issues. He even crashed his dirt bike the second time we let him ride it and gave himself a concussion. The doctor in the ER who knew what ADEM was said Jasper was doing wonderfully after such a short recovery....made him happy and sad at the same time.
