Understanding Symptom Cycles in Pediatric Neuroimmune Disorders
As clinicians and caregivers working with children affected by PANS and PANDAS, it’s common to hear the phrase: “My child is in a flare.” But what does a flare actually mean in the context of these conditions? And how can we respond when a child is going through one?
Thanks to growing research—particularly from the team at Stanford’s Immune Behavioral Health (IBH) Clinic—we now have better data to help define and understand this phenomenon. When we know better, we do better—so let’s take a closer look at what a PANS or PANDAS flare involves and how this evolving research can inform our clinical and caregiving decisions.
For more foundational information about PANS and PANDAS, you can refer to this published article.
Why Terminology Matters
Clear, standardized terminology is crucial when diagnosing and managing conditions like PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome), which often present without clear biological markers. Inconsistencies in language can lead to confusion among clinicians, caregivers, and researchers, making it harder to design effective treatment plans or study outcomes. Just like in other inflammatory or immune-mediated conditions, having a common language helps guide better research, clinical decisions, and support.
How the Definition of a “Flare” Was Studied
The Stanford IBH Clinic conducted a longitudinal study involving 264 pediatric patients who had their first clinical encounter between September 2012 and March 2022, with follow-up data collected through July 1, 2023.
Children were diagnosed with PANS based on sudden onset of OCD and/or severe eating restrictions, along with additional neuropsychiatric symptoms. In cases of PANDAS, sudden OCD and/or tics were observed alongside similar neurological and behavioral changes.
Clinician and caregiver reports, psychometric assessments, and symptom severity scores were analyzed to help track symptom patterns and long-term trajectories.
What Did the Study Reveal About Flares?
Flare Duration and Frequency
Average flare duration: 3.7 to 4.1 months
95% of flares resolved within one year
77% of patients experienced multiple flares within 5 years of their initial onset
43% had flares lasting more than 12 months
The study emphasized a highly variable course among patients: some experienced only one flare, while others followed a relapsing-remitting pattern, and a smaller subset had persistent symptoms.
What Do Flares Look Like Clinically?
Flares are typically marked by a sudden worsening or reappearance of neuropsychiatric symptoms, including:
Obsessive-compulsive behaviors
Tics
Anxiety or emotional lability
Behavioral regression
Motor or sensory changes
Importantly, many children show early flare-like symptoms before officially meeting diagnostic criteria for PANS. This underscores the need for vigilance—clinicians and caregivers must be attuned to even subtle symptom shifts.
Clinical Course Classifications
Based on their findings, researchers proposed terminology to classify the clinical course of PANS:
Single Flare: One flare followed by sustained recovery
Relapsing-Remitting (RR): Recovery from the initial flare followed by one or more recurrences
These classifications help standardize how we talk about disease progression and improve care planning across the board.
Why This Matters for Clinical Care
Understanding that many patients experience a relapsing-remitting course—even years after the first flare—reinforces the importance of long-term monitoring, flexible treatment approaches, and family education.
The study also encourages clinicians to adopt more precise language when describing symptom
trajectories and flare-ups, which can lead to more effective communication and individualized care.
Looking Ahead: Research and Refinement
The next steps for research include:
Clarifying definitions of flares, recovery, and functional impact
Investigating the relationship between flare duration and quality of life
Developing validated biological markers for diagnosis and treatment tracking
Until then, studies like this one serve as essential tools in deepening our understanding of PANS/PANDAS and strengthening how we support affected children and their families.
In Summary
PANS and PANDAS flares represent more than temporary setbacks—they are critical indicators of disease activity that require close attention and coordinated care. As the field continues to evolve, embracing standardized terminology and research-based classifications can help clinicians and caregivers respond more confidently and compassionately.
By understanding what a flare is and how it fits into the broader clinical picture, we can take informed, supportive steps—together.