Family Resources
Guidance for Families Navigating PANS/PANDAS with Clarity and Care
Understanding PANS/PANDAS
How does PANS/PANDAS present in children?
PANS and PANDAS are medical conditions characterized by the abrupt and dramatic onset of neuropsychiatric symptoms, including obsessive-compulsive behaviors, restrictive eating, anxiety, mood changes, tics, and other cognitive or behavioral shifts. Symptoms can vary widely from child to child and may fluctuate over time.
Why do the neuropsychiatric symptoms appear?
A misdirected immune response to an infection can trigger inflammation in the brain, resulting in the neuropsychiatric and neurological symptoms.
What should you do if you suspect PANS/PANDAS?
If you are concerned about the dramatic changes in your child’s behavior, mood, or psychological distress, begin by reviewing the clinical resources below. These tools are designed to support understanding, evaluation, and care coordination with your child’s medical provider.
Tools to Help You at Your Appointment
Clinical Flowcharts
This step-by-step chart can be referenced during the evaluation and management of PANS/PANDAS. This resource can help guide conversations and ensure important considerations are not overlooked.
Symptom Rating Scale
This clinician tool is intended to support medical evaluation by rating and tracking symptom severity. Parents can support this process by documenting observations over time and sharing them with their child’s healthcare provider.
Helpful Information to Bring
1. Timeline of symptom onset
2. List of all symptoms
3. Recent infections or illnesses
4. School reports or teacher observations
5. Videos or examples of behaviors (if appropriate)
Additional Resources
Families often benefit from additional tools and trusted resources as they navigate evaluation, care, and ongoing support. The following materials are designed to help guide next steps and connect you with additional 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. Click here for school resources.
➤ Provider 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, click here to visit the PPN Practitioner Directory.
➤ Support
There are national and regional supportive resources for families affected by PANDAS and PANS. Inclusion in the listing is not an endorsement or a warranty of the information provided by the organizations.
- ASPIRE www.aspire.care
- International OCD Foundation www.iocdf.org
- National Eating Disorders Association www.nationaleatingdisorders.org
- Northwest PANS/PANDAS https://www.nwppn.org
- PANDAS Network www.pandasnetwork.org
- PANS/PANDAS UK (International) https://panspandasuk.org
- Tourette Syndrome Association www.tourette.org
Key Takeaways for Families
- 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. - Communicate with the school.
This will help alleviate stress and establish a better understanding between faculty and student.