Acute Disseminated Encephalomyelitis (ADEM) Support Group

Concerned as mother recently diagnosed

Hello everyone, I am creating a post on behalf of @mdbaene, whose mother was recently diagnosed with ADEM. Matthijs is really hoping to get some insights from all of you on what to expect, and how to best take care of her. Matthijs would greatly appreciate any sort of support or insight!
Please respond below with your suggestions/stories.

-Arjuna from ModSupport

Hi Matthijs, I know it’s a scary thing to see someone you love struggle. Take heart!
First I would suggest finding a neurologist to work with you and your mother. Mine hasn’t dealt with ADEM patients before, but he’s willing to learn.
Once you have a doctor you can trust who will LISTEN (that’s key in being an advocate), tell him/her every single struggle, from standing up to going to the bathroom, dizziness, foggy brain, sleep issues, everything! I dropped things all the time (early on), and once I mentioned this to my current doctor, he got me into physical therapy for every single issue, INCLUDING cognitive and speech therapies!

I personally have found there are some foods that now affect me in my “new normal” state, so I’ve had to give up sugar and wheat along with a number of herbs and spices. I’m not sure that’s true for everyone, but if she plateaus in her recovery, you might consider trying the Auto Immune Protocol to find if there are any foods adding to her challenges. (Wheat for me is a terrible brain fogger!)

I wish you all the best!

Laura

Fantastic to see you back, Laura!

Seenie from ModSupport