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 →
The lions, tigers and bears of the PANS/PANDAS world would include Strep, Mycoplasma and Lyme. There are tons of other triggers, but these tend to be some of the biggest offenders in my experience. We all know about strep and its list of issues it can cause in the body. Mycoplasma Pneumonia is different because... 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 →
Did your child suddenly start behaving strangely? Are they anxious about things that they weren't before? How about school- are they regressing? Have you found yourself Googling symptoms and wondering what happened to your child? You might want to think back and note if they were recently sick. The internet is full of the diagnostic... Continue Reading →
