What is CPAE?
Learn more about Children Pediatric Autoimmune Encephalopathy and
how it’s affecting an alarmingly, growing number of families with children.
Definition
Children’s Postinfectious Autoimmune Encephalopathy (CPAE) occurs when 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 CPAE (e.g. PANS/PANDAS):
Obsessive Compulsive Disorder (OCD)
Restrictive Eating
Tics
Severe Anxiety
Migraines
Irritability and Aggression
Depression
Age Regression
Sensory Sensitivities
Hallucinations
Reasearch Initiatives
Part of our core initiatives are to fund and expand research for
treatment and diagnosis. PACE supports the following research:
IVIG Studies
ABRC Grants
PANS Incidence Study
Microbiome and the Effect on PANS
Diagnosis and Treatment
Physicians should contact the regional CPAE/PANS clinics for current diagnostic and treatment guidelines.
Frequently Asked Questions
There is much to still learn about CPAE 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 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 launched a national incidence/prevalence study.
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:
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.
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.