Hi, my name is mareed29! — Scope | Disability forum

Hi, my name is mareed29!

mareed29 Member Posts: 1 Listener
Hello, my daughter (8) was diagnosed with ADEM (acute disseminating encephalomyelitis) when she was 6 yo in 2019. Among other things, she was completely paralyzed from the waist down. She was treated with intravenous steroids for 10 days in a children's hospital before she was discharged but we had to return after only 3 days because her symptoms returned and quickly worsened. After 5 more days of treatment in the hospital we were discharged again. Since then she has been doing well. She has almost completely recovered with only lingering bladder control problems. She has had a follow up MRI which did show signs of remaining lesions but with a lack of symptoms to go along with the lesions the neurologist has been pleased with her progress. She recently has been complaining of a headache (her first presenting symptom back in 2019). So here is my question, has anyone else recovered from ADEM and had multiple relapses? I don’t always want to jump to such extreme assumptions but as a parent, of course I’m very anxious whenever she complains of headaches or nausea without an easily explainable cause. 


  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Community Co-Production Group Posts: 2,036 Pioneering
    Hi @mareed29

    Welcome to Scope's forum. It is great to see you have joined us. I am really sorry to hear your daughter is experiencing headaches and nausea.

    Unfortunately, I have no experience with ADEM. This means I am hoping someone with more knowledge in this area can respond to you soon. 

    Also, we don't provide medical advice so I am wondering if you have managed to talk to the professionals involved in your daughter's care? They may be able to support you the most effective with this.

    Take care for now and I will look forward to hopefully hearing from you again soon  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her.