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 a PAE disorder?

    Postinfectious Autoimmune Encephalopathy(PAE)is a condition where an infection triggers an autoimmune reaction that targets the brain, leading to changes in neurologic function, mood and behavior. PAE includes disorders such as PANS (Pediatric Acute-onset Neuropsychiatric Syndrome), PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infection).

  • What percentage of children are affected by PAE disorders?

    Currently, PANS/PANDAS are listed as rare diseases on the NIH’s Genetic and Rare Diseases website (GARD) and on the National Organization of Rare Diseases website (NORD).  In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people in the US. This definition was created by Congress in the Orphan Drug Act of 1983. To further define the number of children affected by PAE disorders, The PACE Foundation and its university partners have concluded a national incidence/prevalence study which substantiates the findings of GARD and NORD.

  • Where are 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 is PANS/PANDAS treated?

    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.

    In some cases, children are eligible for IVIG treatment through locations participating in trials. To learn more visit our IVIG Study page

  • I think my child has a PAE Disorder, how can I get them diagnoses and treatment?

    If you believe your child has a PAE Disorder 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 PAE Disorders.

    Download Here

  • 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/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 CPAE disorders?

    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.

  • Is there a specific blood test to positively confirm PANS/PANDAS?

    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.

  • Is there a biomarker for PANS/PANDAS?

    Currently there is no one biomarker.  However, scientific trials are under consideration.  Since CPAE disorders carry 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?

    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.