Some Helpful Information
Resource LIst
🧠 Educational & Medical Resources
1. PANDAS Network
🌐 https://www.pandasnetwork.org
The go-to nonprofit organization for research-based information, treatment options, physician directories, and patient stories. Offers webinars and scientific updates.
2. PANDAS Physicians Network (PPN)
🌐 https://www.pandasppn.org
A trusted site for medically-backed information about PANDAS/PANS for both providers and families. Includes a detailed treatment guide and educational materials for clinicians.
3. Stanford PANS Clinic
🌐 https://med.stanford.edu/pans.html
One of the few major research centers in the U.S. focused on studying PANS. Offers resources for patients and providers.
4. NEPANS (New England PANS/PANDAS Association)
🌐 https://www.nepans.org
Regional resource that offers support, awareness, physician education, and downloadable advocacy toolkits (great for school meetings and IEPs).
👩⚕️ Finding Doctors and Supportive Medical Providers
5. PPN Doctor Directory
🗂 Available through the PANDAS Physicians Network
Connects families with providers familiar with diagnosing and treating PANDAS/PANS.
6. MAPS Doctors (Medical Academy of Pediatric Special Needs)
🌐 https://medmaps.org
Some MAPS providers have experience with immune-related neuropsychiatric conditions, including PANS.
🧑🤝🧑 Parent Support Communities
7. Facebook Groups
Search for:
- "PANDAS/PANS Parents Support Group"
- "PANDAS/PANS Advocacy and Support"
- "PANS/PANDAS Moms Unite"
Private and moderated groups where parents share experiences, ask questions, and find emotional support.
8. Molehill Mountain (for Anxiety + Autism, UK-based but insightful)
🌐 https://www.molehillmountain.org.uk
While not specific to PANDAS, this site supports mental health in neurodivergent kids and may be helpful for overlapping concerns.
🏫 School and Advocacy Resources
9. Wrightslaw
🌐 https://www.wrightslaw.com
Empowers parents to advocate for special education rights, IEPs, and 504 plans — especially when dealing with neuropsychiatric conditions.
10. Understood.org
🌐 https://www.understood.org
Offers parent-friendly articles and tools for navigating school challenges related to anxiety, OCD, and behavior — common in PANS kids.
📚 Books for Parents and Providers
- "Brain Inflamed" by Dr. Kenneth Bock – A comprehensive look at brain-body connections, including PANS/PANDAS
- "Saving Sammy" by Beth Maloney – A mother’s compelling story of her son’s recovery from PANDAS
- "Childhood Interrupted" by Beth Maloney – A practical follow-up with guidance for diagnosis and treatment
- "The Disconnected Kids" by Dr. Robert Melillo – While broader in scope, it touches on neurological inflammation and behavioral changes