Hi fellow parents - my son was diagnosed with ADEM when he was six years old, he is now nine. We continue to suffer from the effects of the disease, including episodic sadness, head pain, stomach pain, difficulty focusing when i. loud or busy environments, and fatigue most days. We are at the hospital now getting another follow up MRI as I write this.
Does anyone have any interest in setting up an email group or having a group phone call to talk about different strategies of how to deal with some of the symptoms that follow an ADEM attack? As a parent I would love to hear what others are doing and of course share some strategies as well.