PANDAS is a Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep that is often misdiagnosed as a mental health disorder. If I was in charge of naming it, I would have gone with Autoimmune Encephalitis Associated with Strep, but AEAS doesn't roll right off the tongue. Brain swelling, no matter the name, can have debilitating effects, and our family has learned of this since our son, Abram was diagnosed in October of 2017. His onset was likely in 2015 following an undiagnosed Strep infection over Thanksgiving that year, with an undiagnosed Scarlet Fever after Christmas. 

When Abram developed nervous ticks and became actively involved with the people who he described living in his head, his teachers and doctors became concerned. As his parents, much of his behavior went unnoticed, and we chalked it up to an active imagination. It was not until we learned of the seriousness of his cognitive decline and his increased anxiety and OCD that we became worried. He lost the ability to do basic math, to write words, and even to follow basic instructions on Legos, something he had enjoyed for some time already. He became selft destructive, clawing at his skin, and tearing holes in his scalp when he was calm, but trying to hurt himself on playground equipment and ranting about suicide at his worst. 

Thanks to a knowledgeable group of friends and a responsive pediatrician, we were put quickly on the road to healing with only a few bumps along the way. Once diagnosed, many families then face financial hurdles, since insurance coverage for this disease is dismal. IVIG is the recommended treatment for moderate to severe PANDAS, much like Chemo is the recommended treatment for moderate to severe cancer. But unlike Chemo, IVIG is often not covered by insurance despite the fact that many kids do not stand a chance of a normal childhood without this treatment. 

Fortunately, there is an amazing organization called SEPPA (Southeast PANS/PANDAS Association) doing the heavy-lifting, educating doctors about PANDAS, lobbying for health insurance legislation, and getting PANDAS kids the affordable quality care that they deserve. 

I am asking my community to give what they can to this cause, as my family joins the walk for awareness this October. Every dime goes to support children like mine in their journey to overcome.