Help! I Think I Have PANS

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.

 

Informational Websites

PANDAS Physicians Network

PANDAS Network

Autoimmune Encephalitis Alliance

Recognizing Autoimmune Neuropsychiatric Disorders

What Is PANS?

Moleculera Labs

 

PANS/AE Specialists

PANDAS Physicians Network Practitioner Directory

Leading PANDAS Physicians

Autoimmune Encephalitis Alliance Doctors

 

Testing/Evaluation Guidelines

PANS Guidelines

Autoimmune Encephalitis Guidelines

 

PANS Treatment Guidelines

https://www.liebertpub.com/doi/pdf/10.1089/cap.2016.0148

 

Scientific Papers:

Neuroinflammation and Psychiatric Illness:

https://jneuroinflammation.biomedcentral.com/articles/10.1186/1742-2094-10-43 

The Mild Encephalitis Hypothesis of Psychiatric Disorders (Abstract):

https://www.sciencedirect.com/science/article/pii/S0941950013000109

Autoimmune Encephalitis – Current Knowledge (Mentions PANDAS):

http://pandasnetwork.org/wp-content/uploads/2013/07/Autoimmune_encephalitis.pdf 

Red Flags: Clinical Signs for Identifying Autoimmune Encephalitis in Psychiatric Patients

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5311041/

Autoimmune Encephalitis: A Case Series and Comprehensive Review of the Literature

https://academic.oup.com/qjmed/article/104/11/921/1563094

Baseline Immunoglobulin Levels Predict Achievement of Remission in PANS:

https://www.elynsgroup.com/journal/article/pandas-baseline-immunoglobulin-levels-predict-achievement-of-remission-at-one-year-following-ivig-therapy

IVIG Therapy in PANDAS: Analysis of Current Literature:

https://www.elynsgroup.com/journal/article/ivig-therapy-in-pandas-analysis-of-the-current-literature