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Should we go to the ER?

ERs are often a hard place for PANS and PANDAS families. Most ER physicians have not been trained on the conditions, and the visit can feel like one more dismissal. But there are situations where the ER is the right place to be. This page is to help you decide and to prepare.

Go to the ER (or call 911) if:

Your child is expressing suicidal thoughts or intent
Your child is harming themselves in a way you cannot stop safely
Your child is violent in a way that is putting them, you, siblings, or others in danger
Your child has not been able to keep down food or fluids for 24+ hours (dehydration risk, especially with food restriction)
You see signs of a serious medical emergency: severe fever, signs of meningitis, seizure, unresponsiveness

These are situations where safety is the highest concern and the ER has the tools to act.

The ER may not be useful for:

A bad behavioral flare that is not creating an immediate safety risk
Confirming a PANS or PANDAS diagnosis (this is not what ERs do)
Getting IVIG or specialized PANS treatment urgently (this needs to be set up with an outpatient PANS provider)
Convincing a skeptical pediatrician that PANS is real (your outpatient advocacy strategy will do more)

If you are facing one of those situations and not an active safety crisis, the work is usually a same-day or next-day call to your pediatrician, your PANS provider if you have one, or a telehealth visit, not an ER trip.

If you do go: what to bring

A short, written summary of your child's history and current flare. One page if possible. Bullet points are fine.
Your symptom log if you have one (printed or on a phone you can show)
A list of current medications and doses
Recent test results (strep cultures, titers, recent labs) if available
The PANS/PANDAS criteria reference (you can print the criteria page)

What to say at intake

Be direct and concrete. ER triage runs on specific words. Some scripts that have helped families:

At ER intake

If your child is having suicidal thoughts

My child is expressing suicidal thoughts. They have a history of PANS or PANDAS, a post-infectious autoimmune neuropsychiatric syndrome, which has caused acute behavioral changes before. We need a psychiatric evaluation and a check for any new infection that may be triggering this flare.

To the ER physician

When asking them to consider infection as a trigger

During my child's prior PANS flares, infection has been a trigger. Could you please run a strep rapid test and culture, and consider a CBC, ESR, and CRP to check for systemic inflammation? If anything comes back positive, the threshold to treat is low for these patients.

If you feel dismissed

Standing firm without being adversarial

I understand PANS and PANDAS may be unfamiliar to you. The American Academy of Pediatrics published a clinical report on PANS in March 2025. I am asking for the safety evaluation and the basic infection workup. We can follow up with our outpatient provider for the rest.

A note on hospital admission

For severe flares, especially with food restriction, dehydration, or severe psychiatric symptoms, hospital admission is sometimes the right move. Pediatric hospitals are usually better equipped than community ERs for PANS care, particularly those connected to academic medical centers with rheumatology and immunology programs.

After the visit

Whatever happens at the ER, write down what was done, what was said, and what was tested. That record is what you bring to your outpatient follow-up to keep the momentum going.

Not medical advice. This content is for orientation only. Diagnosis requires a trained clinician. If your child is in acute distress, contact your provider or go to the nearest emergency room.