PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) are conditions where a child’s autoimmune response to an infection or virus erringly attacks the brain. The resulting inflammation presents an abrupt onset of acute neurological, behavioral and personality changes.

Some symptoms of PANS/PANDAS include:

• Obsessive Compulsive Disorder (OCD)
• Restrictive Eating
• Tics
• Severe Anxiety
• Migraines
• Irritability and Aggression
• Depression
• Age Regression
• Sensory Sensitivities
• Hallucinations

Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) are recognized as rare diseases by the NIH’s Genetic and Rare Diseases Information Center (GARD) and the National Organization for Rare Disorders (NORD). In the United States, a rare disease is defined as a condition affecting fewer than 200,000 individuals, as established by Congress through the Orphan Drug Act of 1983. The PACE Foundation is in agreement with the NIH determination that PANS and PANDAS are rare disorders. 

Recent prevalence and incidence studies further support the classification of PANS and PANDAS as rare disorders:

• Wald et al. (2023): Estimate of the Incidence of PANDAS and PANS in 3 Primary Care Populations (U.S. Study)
• Goren et al. (2024): Frequency and Impact of PANS and PANDAS in Canada

If you believe your child has a CPAE such as PANS/PANDAS, download the pamphlet below to provide your primary care physician. This pamphlet by the University of Arizona provides additional information and guidance for health care professionals to diagnose and treat CPAE Disorders.

Download Here

Additionally, the PACE Foundation collaborates with leading medical institutions to establish a network of specialized clinics dedicated to diagnosing and treating CPAE disorders such as PANS and PANDAS. CPAE clinics are able to provide mutli-disciplined care to provide treatment in a variety of ways. CBT therapy, antibiotics, and IVIG treatment are all forms of care provided at CPAE clinics.

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The PACE Foundation collaborates with leading medical institutions to establish a network of specialized clinics dedicated to diagnosing and treating CPAE disorders such as PANS and PANDAS. These centers offer multidisciplinary care, combining expertise in neurology, immunology, psychiatry, and infectious diseases to provide comprehensive treatment for children affected by these complex neuroimmune disorders.

CPAE clinics are able to provide mutli-disciplined care to provide treatment in a variety of ways. CBT therapy, antibiotics, and IVIG treatment are all forms of care provided at CPAE clinics.

View Clinics

The Children’s Postinfectious Autoimmune Encephalopathy (CPAE) Center of Excellence at the University of Arizona Medical Campus in Tucson opened in August 2016. CPAE/PANS Clinics are currently located or planned at the following institutions:

• University of Arizona
• University of California Los Angeles
• University of Arkansas
• Dartmouth University
• Greater Regional Health Center - Iowa
• University of Wisconsin
• Harvard University
• Stanford University
• The Hospital for Sick Children - Toronto

The percentage of children requiring IVIG treatments is significantly mitigated by early detection and diagnosis, response to proper protocol and access to CPAE clinics.  For example, increased awareness coupled with the CPAE clinics unique ability to provide multi-discipline care, has reduced IVIG recipients from approximately 20% to 10% in some regional areas.

Yes. The CPAE/PANS University Partners was founded on the principle that national and global world-class research initiatives are shared with the multiple CPAE/PANS partners.

Yes. The standard of care and protocols to diagnose and treat children with PANS/PANDAS, has been established in collaboration with the NIMH, the CPAE Center of Excellence and other university partners.

This pamphlet by the University of Arizona provides additional information and guidance for health care professionals to diagnose and treat CPAE Disorders.

Download Here

No.  There is no single blood test available that confirms PANS/PANDAS. However, it is common to have laboratory tests ordered to identify possible infectious triggers and analyze immune system functionality in patients.

Currently there is no one biomarker. However, scientific trials are under consideration. Since PANS/PANDAS carries a clinical autoimmune classification, pediatric autoimmune neurological disorders are based on medical history, lab panels, a psychological assessment and other testing.

Not yet. Early detection, treatment and ongoing management is the key to help affected children manage their condition to live healthy, productive and nearly-symptom free lives.