Medical Conference to Develop Emergency Room Protocols for PANS/PANDAS Pediatric Patients and Psychiatric Patients with Autoimmune Encephalopathy

PANS: Pediatric Acute-onset Neuropsychiatric Syndrome

PANDAS: Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections

A Need for Identifying PANS/PANDAS in the Emergency Room

Children that suffer from PANS/PANDAS experience extreme and sudden changes in their behavior that can be shown in the form of tics, new obsessions or fears, hyperactivity, aggressions, obsessive-compulsiveness, issues with sleeping, bedwetting, memory, and sensitivities to noise, light or touch. Symptoms can be as severe as suicidal ideation. Parents or caretakers unaware of their child’s PANS or PANDAS diagnosis are left flabbergasted and desperate to find answers to help their child, often ending up in the emergency room.

Still too often, these conditions are not recognized as potential symptoms of PANS or PANDAS but seen as a pure psychiatric problem when they are actually medically-induced psychiatric problems. As a result, the children often end up in the emergency room for hours or days, or admitted to the psych ward for suicidal thoughts, and frequently end up being improperly medicated as a result.

Emergency Room Conference

A Need for Identifying Autoimmune Encephalopathy in the in Emergency Room

Similarly to symptoms of PANS/PANDAS, adults and individuals who have autoimmune encephalopathy also experience neuropsychiatric symptoms such as obsessive compulsive disorder (OCD), depression, memory loss, personality changes, paranoia and confusion. When admitted to the emergency room for an extreme neuropsychiatric episode, they also tend to get stuck between being seen by psychiatric or medical care, often ending up in the ER for extended periods of time and only receiving symptomatic treatment versus proper diagnosis and treatment for their true illness.
Early diagnosis for PANS/PANDAS and autoimmune encephalopathy is critical to avoid permanent neurological and psychological issues. The failure in properly identifying these illnesses labels those that suffer them in a way that can further stigmatize them or worsen their condition, misses their diagnosis and fails to get these individuals on a path to proper recovery.

Our Plan to Begin Developing Treatment Protocols

To address these shortcoming emergency rooms face in diagnosing these medical issues, the Foundation for Total Recovery plans to develop a medical conference that brings together leading medical experts in the country to examine existing research concerning emergency room protocols for these conditions and the best available treatments to determine collective protocol solutions. The goal of this conference is to establish the framework for these clinicians to ultimately make collective recommendations to hospitals nationwide on proper treatment protocols. Next steps from this conference will be to develop a whitepaper to serve as a guideline for emergency room clinicians to understand how to properly diagnose and treat patients suffering from these issues.

Who Can Attend?

The educational sessions and discussions from this conference will be available in-person and virtually to healthcare providers and offer continuing medical education (CME) credit and be made available for purchase. The conference will also be available to attend virtually or to purchase by patients, caregivers and the general public.

When?

This conference is currently being developed and is being planned for Spring 2025.

Sponsorship Opportunities

We are currently accepting sponsorship opportunities for the development of this conference. If you represent an organization that is interested in partnering with us, please email us at

[email protected]