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 →
Sometimes, with many illnesses, the safety of the family is in question. That's where hard choices need to be made. Respite Care can provide short-term relief to caregivers and often offers trained providers for those with complex needs. It is available in many different forms and for different situations: for aging adults, adoptive or foster... Continue Reading →
I met another PANDAS mom last week. I was wearing an old awareness shirt that had my son's name listed on the back along with hundreds of other kids suffering. She asked about it and when I confirmed I was parenting a P/P child, I saw her physically untense a little. She knew I could... 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 →
Back when our PANDAS was a mystery, an unknown infiltration into my child's brain, changing our lives slowly and surely, we were told to alter our parenting practices. While I hated this advice, it did cause me to take a step back and think about how I can help manage some of the difficulties we... Continue Reading →
