PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) is a devastating, “hidden” sickness, caused by a virus or other source of inflammation, but often mistaken for behavioral problems or mental illness.
PANDAS (Pediatric Autoimmune Neuropsyciatric Disorders Associated with Streptococcal Infections) is a subset of PANS where Strep is the known trigger. You may see references to PANS/PANDAS or PANS/PANDAS/AE (Autoimmune Encephalitis), a larger umbrella term indicating a number of related conditions in which the immune system attacks the brain, resulting in neural inflammation.
I am a storyteller, not a scientist or a physician. My aim is to draw attention to PANS and to provide readers and listeners with solid sources for further exploration. Fortunately, there are a growing number of good resources online focused on PANS. This is a curated, not exhaustive, list of websites, books, and other resources that have helped me over the past several years since my son’s diagnosis in 2020.
WEBSITES
Aspire
Aspire is my go-to resource for PANS. It is easy to navigate and offers clear explanations of PANS/PANDAS, as well as scientific articles, visuals for social media, and resources for communicating with doctors and schools.
EXPAND
Expand is the European Immuno-neuropsychiatric Association, chaired by a knowledgeable and passionate advocate who has navigated PANS with two of her own children.
PANDAS Physicians Network
PANDAS Physicians Network offers a practitioner directory to help you find local providers who are versed in PANS/PANDAS. Here is the direct link: https://www.pandasppn.org/practitioners/
Stanford
Stanford Medicine PANS Program was the first of its kind to open in a university setting in 2012.
BOOKS
Brain on Fire, by Susannah Cahalan. This book offers a harrowing account of an otherwise healthy young woman whose life is suddenly upended by a rare form of autoimmune encephalitis (not PANS/PANDAS). It is an eye-opening, true story about how the immune system can wreak havoc on the brain, how difficult it can be to find a proper diagnosis, and how high the stakes are for those who suffer.
Saving Sammy: A Mother’s Fight to Cure Her Son’s OCD, by Beth Alison Maloney. As the subtitle suggests, this is a mother’s account of her son’s sudden-onset, debilitating OCD and her quest for answers and treatment. Sammy’s story is a prime example of a neurotypical kid who presented with symptoms almost overnight. His mother’s will to help him is both inspiring and disheartening, a glimpse of the determination required on the part of PANS/PANDAS parents to advocate for their kids.
PANS Diagnostic Criteria
In July of 2010, experts convened at the National Institutes of Health and developed criteria for pediatric acute-onset neuropsychiatric syndrome (PANS). Current diagnostic criteria is as follows:
- Abrupt, acute onset of obsessive-compulsive disorder or severely restricted food intake
- Concurrent presence of additional behavioral or neurological symptoms with similarly acute onset and severity from at least 2 of the following categories:
- Anxiety, Separation Anxiety
- Emotional Lability and/or Depression
- Irritability, Aggression, and/or Severe Oppositional Behaviors
- Behavioral (Developmental) Regression
- Sudden Deterioration in School Performance
- Motor or Sensory Abnormalities
- Somatic Signs and Symptoms, including Sleep Disturbances, Enuresis, or Urinary Frequency
3. Symptoms are not better explained by a known neurologic or medical disorder
4. Age requirement – None
Gray Colored Glasses 