Hi my son was originally diagnosed a year ago today with ADEM (Acute Disseminated Encephalomyelitis) which with other markers in his CSF we warned it may actually be Paediatric MS, well today after his latest MRI we have been told it is MS.
With him being only 9 I was hoping someone could help me out in regards to poss treatment options and information I can research prior to his next app appointments. I work better by doing research and trying to understand his condition.
So if anyone can help me out, that would be great.
I can’t help with much, because it took me many decades to get a diagnosis, but I began having problems when I was about your son’s age.
I just wanted to reassure you that I’ve had a very normal, happy life and just adapted to my problems as they came along. I had to stop long-distance hiking during the summers when I was in my late teens, but I was still okay in cold weather. In my 20’s, I’d have to sit and rest periodically if I was standing at the kitchen counter too long and learned to avoid being directly in hot sunlight. As I got older, I needed naps after a full day at work.
There are so many options available today that I’m sure your neurologist will work with you to find the best option. Just remember that you are your son’s best advocate! Research and ask questions.
