Learning about PANDAS and PANS

Written By: Erica Guetzlaff, Clinical Pharmacist at GHC-SCW

What is PANDAS?1

PANDAS stands for pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections. It was first identified by Dr. Swedo at the National Institutes of Mental Health in 1998.  PANDAS is closely related to PANS:  Pediatric acute-onset neuropsychiatric syndrome.  Both disorders fit under the umbrella of post-infectious autoimmune encephalopathy.  They are usually triggered by an infection, and in PANDAS, the specific trigger is a streptococcal infection such as strep throat.  The child’s immune system mistakenly attacks basal ganglia tissue in the brain, creating inflammation which leads to deficits in motor function, executive processing, behaviors and emotion.

The diagnosis of PANS/PANDAS is strictly clinical, meaning that there is no lab test for the condition. The criteria for diagnosis of PANS are:

  • ABRUPT onset of OCD or eating restrictions, plus at least two of the following:
    • Emotional lability or depression
    • Anxiety
    • Irritability, Aggression, and/or Severe Oppositional Behaviors
    • Developmental regression
    • Academic regression
    • Motor symptoms (like tics) or sensory abnormalities
    • Sleep disturbances, bedwetting or frequent urination
  • Symptoms are not better explained by a known neurologic or medical disorder
  • Age requirement – None

How is PANS/PANDAS Treated?2

The first set of treatment guidelines were published in 2017 in the Journal of Child and Adolescent Pyschopharmacology.

Generally, medical providers order labs in an attempt to identify an infectious trigger and treat the infection based on the results. In many cases, no trigger is identified. There is evidence that antibiotics can improve symptoms even in the absence of infection so antibiotics are often prescribed as a first line of treatment. Often doctors will recommend using anti-inflammatories such as NSAIDs (ibuprofen, naproxen) or will prescribe steroids for inflammation. As allergies can trigger symptoms in some children, antihistamines may be suggested. In some cases, anti-fungal medications are necessary. Low dose selective serotonin reuptake inhibitors (SSRIs) and other psychiatric medications are sometimes used as well.

A portion of children require treatments such as intravenous immunoglobulin (IVIG), plasmapheresis, or immunosuppressive therapies such as Rituximab to find relief from their symptoms.

Cognitive behavioral therapy can be helpful for children whose medical needs have been met.

The Controversy

Many times, children struggle for months or years before this disorder is identified, and part of the reason for this is the controversy that has followed the diagnosis of PANDAS. Some providers refuse to believe that strep can trigger behavioral and motor symptoms.  Some have never heard of the condition.  And, some understand the connection between the pathogen and autoimmunity but aren’t trained to identify and treat.  In fact, many of the PANS specialists found their calling through direct experience with the disorder in a family member or close friend, when they became a “believer”.

Resources for Parents and Providers

The Foundation for Children with Neuroimmune Disorders was formed in Wisconsin in response to a need for awareness, advocacy and education.  The foundation accomplishes this by sponsoring medical provider education, working with the legislature and insurance companies, and reaching out to schools, families, and therapists to increase awareness.  I previously served as the Foundation’s Vice President.  PANDAS—and all the trauma that came with it–has changed my family’s life forever, but working with the Foundation has allowed me an opportunity to change things for others, and honestly, to heal my own heart.

We are especially grateful for the support of GHC-SCW! To learn more about the Foundation, visit www.neuroimmune.org.

PANDAS Physician Network is another great resource for providers.  The scientific advisory board is comprised of national specialists from well-respected institutions like Harvard, Yale, Columbia and Stanford.  The website contains a diagnostic and treatment flowchart for primary care physicians and contains a link to the recently published treatment guidelines.  Visit www.pandasppn.org for more information.

PANDAS Network is a resource for parents looking for information on PANS/PANDAS or who are searching for a specialist.  There is a provider directory on the website.  www.pandasnetwork.org

The National Institute of Mental Health website also contains some useful information for parents and providers.  https://www.nimh.nih.gov/health/publications/pandas/index.shtml

  1. PANDAS Physician Network. PANS: PPN Diagnostic Guidelines. https://www.pandasppn.org/ppn-pans-diagnostic-guidelines/.  Accessed April 30, 2018.
  2. The Foundation for Children with Neuroimmune Disorders. How is PANDAS/PANS/PAE Treated? http://www.neuroimmune.org/learn-more.html.  Accessed April 30, 2018.