PANS/PANDAS Information and Resources • The Dreaming Panda

Image of stuffed panda (representing PANS/PANDAS) in front of a pillow

If you have questions about PANDAS/PANS, you can probably find the answer in the resources below.

Over the years, I’ve found myself repeatedly linking people to certain websites for PANS/PANDAS information and resources. Now I’ve finally put everything onto one central page.

Disclaimer: Nothing on this page constitutes medical advice, and I do not officially endorse anything to which I link.

Medical Information for Patients
Medical Information for Physicians
Where to Find a Doctor
Online Support Groups
International PANS/PANDAS Organizations
United States Regional PANS/PANDAS Organizations
Resources for Related Conditions
Blogs about Encephalitis/PANS/PANDAS
Books about Encephalitis/PANS/PANDAS
Movies

PANS/PANDAS Information for Patients

Symptoms of PANS/PANDAS
Diagnosing PANS/PANDAS (Scroll down for suggested labs)
Find a Doctor (can search for those who treat adults and/or Lyme)
Videos and Podcasts to learn about PANS

NOTE: PANDAS/PANS is a medical condition and should be treated as such. However, gaining skills to cope with OCD symptoms through ERP and CBT was invaluable in my recovery—think of it like going to rehab for a brain injury (because that’s essentially what’s happening). The fact you end up needing rehab doesn’t negate the physical nature of the injury in the first place. Not everyone needs ERP, but many people find it beneficial.

It can be hard for some people with PANS to get very far in ERP in the middle of an acute flare of brain inflammation, but as things begin to settle down, some people find there are lingering OCD symptoms. These will not always respond to more immune-therapy or infection treatment, because neural pathways get established. If that’s the case, there’s a very good chance ERP therapy with an OCD specialist may be the missing piece of the puzzle. Don’t be afraid to try out different therapists if necessary until you find one that you feel gets you and knows how to help.

Also important is to realize that your OCD therapist doesn’t have to be a PANS expert. They just have to be open-minded and willing to see the limitations of therapy and benefits of immune-treatments when having an acute flare.

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PANS/PANDAS Information for Physicians

Neuroimmune Foundation

Free CME Series for Clinicians (PANS/PANDAS Education)
Q&A with Experts
Clinician Resources

PANDAS PHYSICIANS’ NETWORK

Diagnostic Guidelines
Treatment Options
Overview of Treatment Guidelines (JCAP publication)
Research Library

Moleculera Labs

Find a PANS/PANDAS-Literate Doctor

*Caution: As of 2022, most Autoimmune Encephalitis doctors will NOT treat PANS/PANDAS and are ill-informed about it. They are more likely to help if you have recognized Mayo AE antibodies, signs of brain inflammation on imaging or EEG, and/or particularly severe symptoms.

PANS/PANDAS Information for Patients

PANS/PANDAS Information for Physicians

Find a PANS/PANDAS-Literate Doctor

Online Support Groups

International PANS/PANDAS Organizations

Americas:

Europe:

Oceania:

United States Regional Organizations

Blogs about Encephalitis/PANDAS/PANS

By Patients:

By Parents:

Resources for Related Conditions

Immune/Connective Tissue

Mental Health/Neurodiversity

Books about Encephalitis/PANS/PANDAS

First-Person Memoir

Children’s Books

Parent Memoir

School/Education Resources

General Guidebooks

Movies

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