Find a PANS-literate provider

Most families need to advocate to find care. Here is what to look for and where to start.

Why finding care is so difficult

PANS and PANDAS are not yet part of standard medical school curricula. Most pediatricians, emergency physicians, and even many psychiatrists and neurologists have had little or no training in these conditions. Families frequently hear "I have never seen this," or "I don't believe this is real," or receive a psychiatric referral that doesn't account for the possible immunological component.¹⁰

This means the work of finding care often falls on parents and caregivers, sometimes before they have even confirmed the diagnosis. You are not imagining the difficulty. It is real, and you are not alone.

What to look for in a provider

• Familiarity with PANS and PANDAS as clinical entities (even if they express some skepticism, willingness to learn and engage is a good sign)
• Willingness to order strep titers (ASO and Anti-DNase B) alongside a neuropsychiatric evaluation
• Experience with autoimmune or neuroinflammatory conditions in children
• A collaborative approach: willing to work with you and other providers rather than dismissing your concerns outright
• Openness to treating the infection alongside behavioral and psychiatric symptoms, rather than one without the other

Which specialties to consider

There is no single "correct" specialty for PANS/PANDAS. It falls across fields. Families have found help through integrative or functional medicine pediatricians, pediatric rheumatologists, immunologists, neurologists, and some psychiatrists. Increasingly, clinicians who trained or were mentored in PANS/PANDAS practices are working in general pediatrics.

Telehealth has made it significantly more accessible to reach PANS-literate providers who may be located outside your area. Many families' primary PANS provider is a telehealth relationship.

PANDAS Physicians Network directory

The PANDAS Physicians Network (PPN) maintains the most widely used directory of clinicians who are knowledgeable about PANS and PANDAS. It is the best single starting point for finding a provider.⁸

Practical tips for your first appointment

• Bring a written timeline of when symptoms started, what they look like, and whether they coincided with an illness. Specificity is your strongest tool.
• Bring strep test results if you have them, or request titers at the appointment.
• If you have been keeping a symptom log, print it or bring it on your phone.
• Ask specifically about PANS and PANDAS by name. Some providers are familiar but will not raise it unless you do.
• It is OK to see more than one clinician or to seek a second opinion if you feel dismissed.