Newly diagnosed

ADEM Mom,

Again i sound like a broken record , but how is your daughter's progression?

ADEMMom said:

Hi,

I want to start by saying YOU have to be your child's best advocate. We were in a major city's childrens' hospital and NO one there had even heard of ADEM. We ended up at another hospital very well known for neurological issues and of the peds neurologists working there, only one had ever dealt with ADEM.

When my daughter got out of inpatient rehab, she slept and went to outpatient rehab. Loud noises and crowds bothered her. We weren't even allowed to have the TV on loud. In Feb. (4 months from initial symptom), she went back to school and her afternoon was spent sleeping in the nurse's office for a 2 hour nap.

I think each person displays different symptoms so I would suggest just looking for what used to be and watch for any new symptoms. My daughter's big issues were walking, academics/memory(couldn't remember her middle name) and personality changes.

Best of luck!

For all wondering - my daughter was kinda diagnosed in 2007. She wasn't given diagnosis in writing. Anyway, she has recovered 100%. SHe remembers very little about those months of her life, but that is probably better!