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 →
The first story submission from Kristin: On June 26 at 1:00 p.m., our lives changed in the blink of an eye, literally. It was that sudden, which later would be the key to where we are now. That morning Judd woke up his usual self, pumped for his first baseball tournament. He played ball at... Continue Reading →
I started journaling when my trenches were just dips in the mud. It started as my son's food diary and notes of medications, doctor visits and symptoms so I could be prepared. I had no idea how important those things were until I needed them as our journey got more complex and heavier. As things... Continue Reading →
I'm not a doctor or a scientist. I'm just a parent who, after having my concerns ignored by medical professionals for over five years, went on a pursuit of knowledge myself. I will always try to steer clear of information that is not available from reliable and trustworthy sources. I will always do my best... 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 →
