@KatieT from New England has joined us! Her 2 year old son had an attack which the neurologist suspects is ADEM. While he is thankfully almost recovered, Katie is waiting on spinal tap test results for June 21st.
Katie— we hope to be of help to you over the next little while. Please feel free to ask the community any specific questions you may have, as I know you wanted to find out what other people’s experiences were!!
All the very best Katie, we are rooting for you and your little son!!
Thank you for introducing me! I would love to hear other people’s experiences with young children. This all happened on May 17th and was absolutely terrifying for myself and his father to witness, and obviously for him to experience! As of right now he seems almost fully recovered. His mood, personality, mobility, and everything seems to be improving every single day! I’m so grateful for every moment. The whole experience really changed my outlook on life. I’m trying to stay positive, but you can find some scary things online. I can’t wait for the June 21 appointment to have some more information.
Hi Katie,
Remember everyone’s symptoms are different. I consider myself lucky, because I didn’t have it as bad as some. Hopefully, your son is the same way. Don’t let some of the worse cases scare you. Simply take one day at a time and you’ll be able to deal with whatever comes up.
If you have any questions or comments, simply post a new comment. There are plenty of parents and us older patients who are willing to offer support. Good or bad, we’re here to listen.
Thank you, Lynne. As I read through this forum, it seems many people have had some success stories. Does anyone know if people are predisposed to ADEM for a specific reason? Or is it completely random? I see a lot of comments about changing diets, ect. How does that help? And people that have changed their child’s (or their own) diet after ADEM, have you seen a positive change?
Katie,
Everything I’ve learned shows that ADEM is random. I got it from a neurovirus at 55. It seems like it always comes from a virus or vaccine. The way it was explained to me was that the immune system goes berserk while trying to fight whatever you got.
As far as nutrition, I think the purpose is to try to stay as healthy as possible.
Hi @Lavanessa8 , I know it’s been a very long time but how are you and your daughter doing now? Would love to hear any updates on how things are going!