What is PANS & PANDAS?

PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) is a clinical diagnosis given to children who experience a dramatic — sometimes overnight — onset of neuropsychiatric symptoms, including obsessive-compulsive behaviors and/or food restriction. Diagnostic criteria for PANS were developed in 2012 by the National Institute of Mental Health (NIMH).

PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) is a subset of PANS. In PANDAS, the sudden onset of symptoms is specifically associated with a documented Group A Streptococcal infection, such as strep throat or scarlet fever.

Both conditions are thought to involve an abnormal immune response that affects the brain. In PANDAS, the immune system's response to strep bacteria is believed to mistakenly affect areas of the brain involved in movement and behavior, similar to the mechanism seen in Rheumatic Fever. The cause of PANS more broadly may involve infections, metabolic disturbances, and other inflammatory processes.

It is important to note that PANS and PANDAS remain areas of active research. Diagnosis can be challenging, and not all clinicians have equal familiarity with these conditions.

Common Symptoms

• Sudden, dramatic onset of obsessive-compulsive behaviors (OCD-like symptoms)
• Food restriction or refusal
• Severe anxiety or panic attacks appearing abruptly
• Tics — sudden, repetitive, involuntary movements or sounds
• Emotional instability, irritability, or sudden personality changes
• Regression to younger behaviors (such as separation anxiety or bedwetting)
• Difficulty with concentration or schoolwork
• Sleep disturbances
• Sensory sensitivities
• Handwriting changes or decline in fine motor skills
• Urinary frequency or urgency

Who Can Be Affected?

• Children, typically between the ages of 3 years and puberty — though later onset is possible
• PANDAS specifically follows a documented streptococcal infection; PANS may follow various infections or inflammatory triggers
• Boys and girls can both be affected
• Children may have a relapsing-remitting course — symptoms improve and then suddenly worsen, often in connection with new infections

What Daily Life Can Look Like

• School can become extremely difficult — cognitive challenges and anxiety can make attendance or concentration hard
• Ordinary activities may trigger severe anxiety or compulsive behaviors
• Family routines may be significantly disrupted by the unpredictable nature of the condition
• Children may appear as if they have changed personality overnight, which can be alarming for families
• Medical appointments across multiple specialties may be required
• Social relationships may be affected during flare periods

Common Misconceptions

Diagnosis & Treatment Overview

Diagnosis of PANS/PANDAS is clinical — meaning it is based on the child's symptom presentation, history, and response to infection-related triggers, rather than a single definitive test. A physician evaluates the child's symptom onset, severity, and course, and rules out other conditions.

For PANDAS specifically, testing for a recent streptococcal infection (such as a throat culture or blood tests for strep antibodies) is part of the diagnostic process.

Treatment approaches may include:

• Treatment of any identified underlying infection (such as antibiotics for strep in PANDAS cases)
• Cognitive behavioral therapy (CBT), particularly for OCD symptoms
• Medications used to address anxiety, OCD symptoms, or other neuropsychiatric symptoms, as appropriate
• Anti-inflammatory or immunomodulatory treatments in some cases — this area of treatment is still being researched

A multidisciplinary team — which may include a pediatrician, neurologist, psychiatrist, and immunologist — is often involved. Families are encouraged to work with clinicians who are familiar with PANS/PANDAS specifically.

How to Support Someone

• Respond with patience and compassion — behaviors during a flare are symptoms, not choices
• Document symptoms carefully, including timing in relation to any illnesses — this information is valuable for the medical team
• Work with the child's school to put accommodations in place during difficult periods
• Connect with PANS/PANDAS parent support communities for guidance from families with shared experience
• Seek evaluation from a clinician familiar with PANS/PANDAS — not all providers have equal experience with these conditions
• Avoid minimizing what the child is experiencing — the sudden severity of symptoms can be frightening for children and families alike

Trusted Resources

The following organizations provide additional information. Heart & Hope Project is not affiliated with these organizations.