FAMILY RESOURCES
Helping Families Navigate PANS/PANDAS with Clarity and Care
What is PANS and PANDAS?
PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) is a medical condition characterized by:
- Abrupt and dramatic onset of Obsessive-Compulsive Disorder (OCD) and/or Avoidant/Restrictive Food Intake Disorder (ARFID).
- Concurrent symptoms such as separation anxiety, emotional dysregulation, aggression, behavioral regression, academic decline, motor/sensory abnormalities, and urinary frequency.
PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infections) is a subset of PANS associated with Group A strep infections. The primary symptoms for PANDAS is acute onset OCD and/or tics.
Refer to PANS Diagnostic Criteria
Refer to PANDAS Diagnostic Criteria
Why Symptoms Appear
A misdirected immune response to an infection can trigger inflammation in the brain, resulting in neuropsychiatric and neurological symptoms.
Important Takeaways
- PANS/PANDAS is not caused by poor parenting. Symptoms arise from neuroinflammation driven by an abnormal immune response.
- PANS/PANDAS is a clinical diagnosis. There is currently no definitive laboratory test to confirm or exclude PANS or PANDAS.
- Strep infections aren’t always obvious. Even if a child shows no typical strep throat symptoms, abrupt changes in behavior could indicate an untreated strep infection.
- PANS/PANDAS is treatable. Treatment is based on symptom severity and addresses underlying triggers (such as infections), immune system dysfunction, and symptoms.
- Family education and support is critical. Obtaining material on treating and managing childhood OCD is an important step.
- PANS has a relapsing remitting course. Most children will experience at least one recurrence of symptom onset due to a PANS trigger.
- Communicate with the school. This will help alleviate stress and establish a better understanding between faculty and student.
Resources
School Resources
School can be difficult for PANS/PANDAS children. This resource provides information on the school impact, steps a school professional can take to help, and considerations for health care professionals in the education of PANS-affected students.
National Resources
Access a list of multi-disciplinary clinics that specialize in PANS/PANDAS.
Practitioner Directory
Primary care providers, including pediatricians, family physicians, and nurse practitioners, can diagnose PANS/PANDAS and implement the majority of treatments. However, if you need help finding a clinician familiar with PANS/PANDAS, visit the PPN Practitioner Directory.
Watch Our Townhall
Learn about the impact of infection and inflammation on mental health and psychiatric disorders and personal experiences surrounding the extraordinary challenges of PANS/PANDAS in this 90 minute townhall.
Support for Families
There are national and regional supportive resources for families affected by PANDAS and PANS. All listed resources are 501c3 non-profits. Inclusion in the listing is not an endorsement or a warranty of the information provided by the organizations.
- ASPIRE www.aspire.care
- PANDAS Network www.pandasnetwork.org
- International OCD Foundation www.iocdf.org
- National Eating Disorders Association www.nationaleatingdisorders.org
- Tourette Syndrome Association www,tourette.org
- Northwest PANS/PANDAS https://www.nwppn.org/
- PANS/PANDAS UK (International) https://panspandasuk.org/