For those of you who are just beginning to look into PANS/PANDAS or autoimmune encephalitis, it can be overwhelming figuring out where to start. I’ve compiled a list of helpful websites that explain the illness well, as well as some publications that you can share with your doctors.
Most people, unless they get better from antibiotics and oral steroids (or alternative treatments) alone, end up needing to see a specialist of some kind to get treatments like IVIG, Rituxan, or plasmapheresis. Unfortunately, these doctors have long waiting lists.
I would suggest, if at all possible, you find someone local who can order PANDAS Physician’s Network’s recommended basic tests to bring to the specialist at your first appointment. Your specialist may want additional tests, but it can expedite the process if you have the basic ones in hand already.
Disclaimer: I am not a doctor, and I do not officially endorse any provider or treatment. This page does not constitute medical advice.
PANS Treatment Guidelines
Neuroinflammation and Psychiatric Illness:
The Mild Encephalitis Hypothesis of Psychiatric Disorders (Abstract):
Autoimmune Encephalitis – Current Knowledge (Mentions PANDAS):
Red Flags: Clinical Signs for Identifying Autoimmune Encephalitis in Psychiatric Patients
Autoimmune Encephalitis: A Case Series and Comprehensive Review of the Literature
Baseline Immunoglobulin Levels Predict Achievement of Remission in PANS:
IVIG Therapy in PANDAS: Analysis of Current Literature: