According to The Heartwood Program in Bethesda, MD, if a child's symptoms cannot be explained by a known disorder such as Sydenham chorea, Tourette syndrome, etc., then sudden-onset OCD or severe food restrictions plus symptoms from two of the following categories warrants evaluation for PANDAS or PANS:

  1. Anxiety
  2. Extreme mood swings and/or depression
  3. Irritability or severely oppositional behaviors
  4. Developmental regression
  5. Worsening school performance
  6. Sensory or motor abnormalities
  7. Sleep disturbances, bedwetting, etc

Because PANS and PANDAS were identified relatively recently*, many parents, educators and even medical providers may not be familiar with the associated symptoms. Sadly, responses often include disciplinary actions or inappropriate medical or psychological treatments, when specific medical interventions for PANS or PANDAS may be needed.

PANDAS parents are often compelled to do their own research to determine how best to help their child. Parent Doris O'Meara recognizes the need for more readily available information. "I wish there were more knowledge and resources," she said. "So many doctors aren't familiar with PANS/PANDAS. It's taken us years to get

to where we are [with treatment], and we just started on the road to healing." Another parent explains, "I recently heard someone refer to PANDAS parents like us as 'involuntary experts.' I thought that was such as good way of describing it." These parents are among many who have benefitted from Facebook groups formed for parents of children with PANS and PANDAS to share information and support each other in their quest to help their children.

"PANDAS PARENTS ARE OFTEN COMPELLED TO DO THEIR OWN RESEARCH TO DETERMINE HOW BEST TO HELP THEIR CHILD."

This resource guide, while not exhaustive, is designed to help parents and educators learn more about PANDAS and PANS and to determine the best way to help children suffering from such autoimmune disorders. The websites, videos, books and social media sites listed below include information about symptoms, treatments, specialty physicians, nurse practitioners and treatment clinics, as well as supportive words from parents and children who readily share their experiences with PANDAS and PANS. •

ABOUT THE AUTHOR:

Kara Jolliff Gould, Ph.D., is Assistant Professor of Journalism at the School of Journalism and Strategic Media at the University of Arkansas. Previously, she has taught at colleges such as Weber State, John Brown University and Pepperdine. She has worked professionally in journalism and electronic media in Chicago and Salt Lake City and holds degrees from Wheaton College (IL) and the University of Utah. She is acquainted with the needs of students with disabilities, both as a professor and as a parent.

U.S. STATES WITH LAWS THAT REQUIRE INSURANCE COVERAGE FOR PANDAS/PANS TREATMENT*

*Source: cga.ct.gov/2022/rpt/pdf/2022-R-0104.pdf

LINKS TO FACEBOOK SUPPORT GROUPS

SPECIALTY CLINIC WEBSITES

bannerhealth.com/locations/mesa/banner-childrens-specialists-postin- fectious-autoimmune-encephalopathy-clinic-dobson

http://www.greaterregional.org/pans

massgeneral.org/children/pediatric-neuropsychiatry-and-immunology

med.stanford.edu/pans.html

peds.arizona.edu/cpae

uamshealth.com/location/arkansas-childrens/cpae-clinic

http://https//uwhealth.org/locations/american-family-childrens-hospital-169/pedi-atric-acute-onset-neuropsychiatric-syndrome-pans-clinic-1292