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What are PANS and PANDAS?
Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) are conditions in which neuropsychiatric symptoms—changes in mood, thoughts, or behavior tied to the brain—may be triggered by infection and/or a dysregulated immune response. The leading model holds that these symptoms have a biological, rather than purely psychological basis, though exactly how this happens in the body isn't fully understood yet.
The two are closely related: PANDAS is a subset of PANS, specifically triggered by strep. PANS is the broader category which may follow other infections or immune triggers, though a specific trigger is not always identified.
Addressing the Controversy
PANS/PANDAS remains controversial in some medical and mental health circles, not because acute-onset neuropsychiatric symptoms don’t occur, but because the evidence base is still developing and how the conditions work isn't fully understood. The concept that infections, immune dysfunction, or inflammation may contribute to sudden-onset OCD, anxiety, tics, eating restrictions, or other neuropsychiatric symptoms requires clinicians to view the brain as vulnerable to disruption from the immune system.
Getting Diagnosed
The traditional definition of PANS is a sudden, dramatic onset of OCD and/or severely restricted eating (a sharp drop in the ability or willingness to eat), accompanied by other psychiatric and neurological symptoms or a severely abrupt worsening of previously present symptoms. These can include sudden anxiety or irritability, tics, changes in handwriting or movement, sleep problems, or a noticeable worsening of school performance.
PANDAS has a more specific definition involving OCD and/or tics, prepubertal onset (symptoms starting before puberty), an episodic course, neurologic abnormalities (movement changes, such as messier handwriting or clumsiness), and a strep infection that happens before or around the same time as the symptoms.
Think of it as a rocket ship taking off: the change is typically fast and dramatic. That said, for some children, the earliest episodes are mild and brief; symptoms appear, then fade on their own, only to return later. The symptoms also can't be better explained by another known neurological or medical disorder.
There's no single test that can confirm PANS or PANDAS; they are clinical diagnoses, which is why families are often initially misdiagnosed and go a long time without answers. Anxiety, tics, and hyperactivity are common on their own, so a clinician may address each one without suspecting that a single medical cause could be tying them together.
Medical Treatment
Treatment for PANS/PANDAS should work on several fronts at once, including medical, psychiatric, and psychotherapeutic (talk therapy) interventions. Depending on the presentation and medical findings, medical treatment may involve antibiotics, anti-inflammatory medications, and sometimes immune-modulating therapies (treatments that calm or adjust how the immune system is working).
While some individuals improve with antibiotics and/or anti-inflammatories, others may be considered for more intensive immune-focused treatments, depending on severity, clinical findings, and specialist evaluation. Psychiatric medications, such as those used for OCD and anxiety, may also be part of care; because individuals with PANS/PANDAS may be more sensitive to side effects, prescribers often start at low doses and adjust gradually.
Medical providers may consult the clinical consensus guidelines published by the PANS Research Consortium and the PANDAS Physician Network Guidelines, among other current guidance, recognizing that treatment recommendations vary depending on the immune system and infectious triggers of each individual case.
Medical evaluation and treatment are critical in the care for PANS/PANDAS. A leading model proposes that the immune response, possibly involving inflammation in the brain, disrupts neural circuitry (the brain's wiring, or how brain cells communicate with one another), which may contribute to the neuropsychiatric symptoms. This mechanism is supported by clinical experience and a growing body of research, but has not yet been definitively proven.
People with PANS may report:
- a loss of self-control over mood, thoughts, movements,
- changes in sensory, visual, attention, memory, and motor functioning,
- extreme avoidance of everyday demands,
- extreme fear and irritability,
- cognitive changes, school decline, and/or developmental regression,
- loss of appetite and/or willingness to eat,
- sleep disturbances,
- urinary frequency or incontinence,
- and/or hallucinations, psychosis-like symptoms, and aggression.
Because these symptoms can be so broad, severe, and intense, families often need to provide significant support and temporarily adjust routines and expectations to keep the individual safe from self-harm, harm to others, or other high-risk behaviors.
Therapy
The research on psychotherapy specifically for PANS/PANDAS is limited, so we adapt the gold standard treatment for OCD—Exposure and Response Prevention (or ERP)—to this population, based on clinical experience and the broader OCD literature.
In ERP for OCD, we gradually help the client face what triggers their anxiety without engaging in the compulsion, and the individual learns they can tolerate the discomfort and uncertainty without acting on it. For ERP to be effective, the client must be able to participate in the session. However, when mood, trauma, psychosis-like, or cognitive symptoms are present and severe in individuals with PANS or PANDAS, it may be difficult for the person to tolerate exposure therapy. Therefore, for individuals with PANS/PANDAS, we build flexibility into the ERP plan from the start, and the therapist coordinates closely with the family and medical team throughout care.
Because PANS/PANDAS involves more than just OCD symptoms, treatment often needs to address a broader range of symptoms than ERP alone. Clients may also require add-on interventions, including Dialectical Behavior Therapy (DBT), a type of therapy that builds skills for managing intense emotions and tolerating distress, and trauma-focused treatment when traumatic memories are part of the picture.
Flexibility is a crucial element of therapy for PANS/PANDAS, as is finding a therapist who is well-versed in PANS/PANDAS or at the very least is open to learning about these conditions. The therapist needs to be attuned to where a client is in their symptom process and adjust interventions accordingly. Therapists should coordinate closely with the medical team, be wary of psychotherapy burnout, and warn families upfront that healing will have its ups and downs so they aren’t caught off guard down the road.
For Caregivers
The weight of caring for a child with PANS/PANDAS, particularly during an active flare, can’t be overstated. Families may carry heavy stress or even trauma, not only because of the symptoms but of navigating the healthcare system while caring for their child in crisis. Parents' own well-being matters, not just for them, but to support the grueling task of supporting their child's recovery.
Support for parents can take several forms:
- providing guidance on parenting the condition,
- helping caregivers access specialists,
- helping parents become a unified front in terms of understanding and managing the disease,
- coaching on SPACE (Supportive Parenting for Anxious Childhood Emotions, a parent-focused approach that helps caregivers respond supportively to their child's anxiety and reduce accommodation) or a modified SPACE approach or ERP strategies, when these interventions are appropriate (timed to where the individual is in their recovery), as well as
- building connections with other PANS families or getting involved in advocacy.
Therapists working with these families should remember that individuals in a PANS flare can be poor historians due to cognitive and memory changes and may mask their symptoms in public. PANS symptoms are also sometimes most severe in the home, when the individual with PANS is tired or triggered by the boundaries of everyday life (e.g., requests to eat, brush teeth, stay safe, and/or getting along with siblings), so assessment of severity may be different than in other childhood mental health conditions.
A Note of Hope
Despite the severity of PANS/PANDAS, substantial recovery and even full healing are possible, and prompt, coordinated, integrated multidisciplinary treatment improves the chances of a good outcome. While medical treatment is critical, psychiatrists, therapists, and other specialists each play a role in helping the individual and family stay as functional as possible through relapses and supporting full rehabilitation as medical contributors are addressed and symptoms improve.
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