At some point in your journey to diagnosis for a chronic, rarely diagnosed, or "zebra" illness/disorder/syndrome, you start The Notebook. The Notebook will contain important information about your child's (or your) health, medications, supplements, and more. Ours was a random pink binder that I had shoved under a desk. About five years in and several... Continue Reading →
TW: this will not be a positive post..and that’s okay sometimes. As I go back over my manuscript to add more important detail and information, I find myself going back to those times: Relentless weeks of a child screaming at me that this is My Fault. The waking during the night in a panic, soaked... Continue Reading →
It's not just you. When I first read about the Caregiver Burden Index in relation to PANDAS/PANS families, I was relieved. I harbored a lot of guilt inside feeling the way I did, the heavy blanket of depression and apathy that I started to pull over me after years into the fight. The 'score' is... Continue Reading →
