PANS and PANDAS: Frequently Asked Questions
There is much to still learn about CPAE disorders but here are some helpful answers to the more popular frequently asked questions. Is there a question you would like us to add? Click here to send us a suggestion.
What is PANS/PANDAS?
PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) are types of Children's Pediatric Autoimmune Encephalopathy. These conditions occur when a child’s immune system mistakenly attacks the brain after an infection, leading to neuroinflammation. This causes a sudden, "overnight" change in behavior, personality, and neurological function.
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
What percentage of children are affected by PANS and PANDAS?
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
I think my child has PANS or PANDAS, how can I get them diagnoses and treatment?
If you notice signs of abrupt onset neuropsychiatric symptoms, the first step is finding a provider who understands the CPAE spectrum.
We recommend downloading the University of Arizona's pamphlet which provides PANS/PANDAS diagnostic protocols for physicians to bring to your health care provider.
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 multidisciplinary care to provide treatment in a variety of ways. CBT therapy, antibiotics, and IVIG treatment are all forms of care provided at CPAE clinics.
How is PANS/PANDAS treated?
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.
Where are PANS/PANDAS clinics located?
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:
How many PANS/PANDAS children need IVIG treatments?
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.
Will New CPAE or PANS Clinics Be Able To Participate In “World-Class” Research Conducted By The CPAE/PANS University Partners?
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.
Do standards and protocols exist for PANS and PANDAS?
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.
Is there a specific blood test to positively confirm PANS/PANDAS?
No, there isn't one single blood test to confirm a case. Though it is common to have laboratory tests ordered to identify possible infectious triggers and analyze immune system functionality in patients, PANS and PANDAS are clinical diagnoses. This means doctors look at medical history, symptom onset, and lab panels to rule out other triggers. PACE is actively funding research to find reliable biomarkers for pediatric neuroinflammation.
Is there a biomarker for PANS/PANDAS?
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.
Is there a cure for PANS or PANDAS?
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.