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When your child is diagnosed with PANS or PANDAS, the immediate feeling is often overwhelming isolation. You’re suddenly thrust into a world of medical jargon, conflicting advice, and, often, a frustrating lack of support from traditional medical professionals. I’ve been there. I know the chaos, the frustration, and the desperate searches for something to help. That’s why I’ve pulled together this resource page, to help you cut through the noise and find reliable, science-backed information.
These organizations provide crucial support, up-to-date research, advocacy, and often connect families with experienced healthcare professionals who understand PANS/PANDAS.
PANDAS Network
www.pandasnetwork.org
One of the leading advocacy groups dedicated to raising awareness about PANS/PANDAS. They offer a wealth of information on symptoms, treatments, and research, and help connect families with knowledgeable providers.
The PANDAS Physicians Network (PPN)
www.pandasppn.org
A valuable resource for both parents and healthcare professionals, PPN provides guidelines on diagnosing and treating PANS/PANDAS. They also maintain a directory of providers familiar with the disorder.
Whether I was folding laundry, driving to yet another appointment, or just trying to steal a quiet moment, hearing from doctors, researchers, and other parents navigating similar paths helped me feel less alone and often sparked new ideas for managing care.
I’ve organized this list to cover a wide range of topics, from PANS/PANDAS-specific episodes to deeper dives into related issues like gut health, mold, detox, and more. Whether you’re new to this or looking to expand your understanding, these podcasts will guide and support you every step of the way.
When my son was first diagnosed, it felt like we were handed a puzzle with half the pieces missing—and no picture to show us what we were even trying to build. We were stuck in a frustrating holding pattern with the conventional medical model: we had to wait six weeks after stopping steroids just to take the Cunningham Panel, then wait several more weeks for the results, and then wait even longer—sometimes months—to get on our specialist’s schedule for IVIG or plasmapheresis. All the while, my son’s symptoms were off the charts. He was at the severe end of the spectrum, and our home life reflected it—rage, aggression, destruction. It felt like living in a war zone. Waiting months for help simply wasn’t going to work for me.
Swedo SE, et al. (1998). Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections: clinical description of the first 50 cases. Am J Psychiatry. 155(2):264–271. This foundational study by Dr. Susan Swedo formally introduced PANDAS and described the core clinical features in children following strep infection.
Chang K, Frankovich J, Cooperstock, et al. (2015) Clinical evaluation of youth with Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS): recommendations from the 2013 PANS Consensus Conference. J Child Adolesc Psychopharmacol. 25(1):3–13. A consensus paper developed by leading clinicians and researchers outlining how to evaluate a child with suspected PANS.
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