Obsessive Compulsive Disorder (OCD)
OCD affects an estimated 1–4% of children and adolescents.⁴ In traditional OCD, symptoms emerge gradually and become more involved and burdensome over time; symptoms tend to be persistent with minor variance. In contrast, PANS/PANDAS-related OCD is marked by an abrupt and dramatic onset typically from mild or no symptoms to debilitating. Parents often recall the exact date of symptom onset, and frequently describe it as coming “out of the blue.”

Diagnosing OCD in children can be challenging, as compulsions may resemble oppositional behavior, particularly when children react strongly to being prevented from performing rituals. Compulsions may be covert and difficult to observe (e.g., mental rituals) or appear as exaggerated versions of normal behavior (e.g., excessive hand washing). Common OCD rituals include washing/grooming, checking (e.g., locks, door), counting, ordering/symmetry, restrictive eating, and repetitive questioning. Clinicians typically use the Children’s Yale-Brown Obsessive Compulsive Checklist and Scale (CY-BOCS) to assess symptom severity.

Treatment options for PANS/PANDAS differ from traditional OCD and may include antibiotics, anti-inflammatory medications, and immunomodulatory therapies such as IVIG. As with traditional OCD, patients with PANS/PANDAS benefit from behavior therapy to assist with symptom management. It is important to note that some children with PANS/PANDAS may be unable to participate in behavioral intervention during acute phases due to the severity of symptoms and/or an inability to connect with a clinician. Understanding the unique onset and progression of PANS/PANDAS-related OCD is essential for appropriate interventions to be implemented.

Eating Restriction
Children with PANS/PANDAS may refuse food for several reasons, such as fear of vomiting or choking; sensory sensitivity to taste, smell, and texture; or concerns that food is contaminated, spoiled, or poisoned. In some cases, the restricted eating is directly related to body image distortions, including concerns about being overweight, regardless of the child’s actual weight.

Anxiety
Anxiety may present as persistent generalized anxiety or age-inappropriate separation anxiety.

Sensory Amplification
Children with PANS/PANDAS may become uncharacteristically and intensely bothered by smells, tastes, sounds, and textures. These sensitivities can interfere with everyday activities, such as brushing teeth, riding in a car, eating, or dressing.

Motor Abnormalities
Children with PANS/PANDAS may exhibit motor and vocal tics, handwriting deterioration, and/or clumsiness.

Handwriting Example

Urinary Frequency
Urinary frequency is a common early complaint. A careful history will often expose additional symptoms, such as polyuria (urinating many times per hour), frequent urges to urinate, and/or day and night secondary enuresis. These urinary symptoms are not due to UTI, anxiety, or OCD type worries.

Deterioration in School Performance
Psychological testing of children with PANDAS has found challenges in visual-spatial memory, executive functioning, and fine motor skills. Children with PANS/PANDAS may also struggle with reduced processing speed, memory difficulties related to executive function, challenges in math, and fluctuating performance. For instance, a child’s printing ability might shift dramatically—from a third-grade level to a first-grade level within a week—only to return to the third-grade level a month or two later.

Mood Disorder
During a PANS/PANDAS exacerbation, children may exhibit depression, mania, irritability, emotional lability, and rage. Children may experience rapid mood shifts (e.g., happiness to sadness to anger within moments). They may also experience episodes of intense, reactive rage (as opposed to predatory rage) that may start instantaneously and resolve just as quickly, often leaving the child feeling remorseful or confused.

Behavioral Regression
Children with PANS/PANDAS may display regressed behaviors, such as baby talk, refusal to carry out age-appropriate grooming activities, tantrums, and/or clinginess.

Sleep Disturbances
Polysomnographic studies have revealed a variety of sleep abnormalities in children with PANS/PANDAS, including initial and middle insomnia, REM behavior disorder, parasomnias, and/or sleep phase shifting.

1. Evaluate for Group A Streptococcal (GAS) infection.
Inquire about recent exposures to streptococcal infections, and symptoms of GAS infection (sore throat, headaches, and abdominal pain), rashes, and perianal itching. If inappropriate to the office situation, refer to the primary care provider for the following exam and specimen collection. Examine and vigorously swab the throat and nose. Examine skin for a scarlatina or perianal rash. If symptoms and physical exam suggests, swab perianal and vaginal areas.

If the rapid strep test is negative, the swab should be sent for a 48-72 hour GAS culture. Perianal culture orders should indicate that evidence of strep is sought. If the clinical encounter is within 2 weeks of symptom onset, check for rising antibody titers (ASO, Anti-DNAse B) by obtaining an initial set of titers and repeating after 4-6 weeks. Since elevated titers are common in grade-school aged children, anti-streptococcal titers are only helpful when a two-fold rise in titers is observed.

Because GAS infections are contagious and often spread back and forth among family members, if the child with PANS/PANDAS tests positive, it may also be appropriate to test close family members. Identifying and treating asymptomatic carriers may decrease the risk for subsequent GAS infections in the child.

There is strong evidence from studies of acute rheumatic fever that abrupt onset OCD symptoms can result from otherwise asymptomatic GAS infections. Similarly, children with PANS/PANDAS do not always present with “classic strep throat” despite colonization and infection. Accurate detection of GAS requires a thorough throat swab, with attention to the tonsils and posterior oropharynx. Importantly, more than 37% of children with positive GAS cultures may not show elevated titers with ASO and Anti-DNAse B, even when tests are correctly timed. These findings reinforce the importance of comprehensive evaluation, including careful lab testing, review of symptom history, and examination of the skin. All identified GAS infections should be appropriately treated.

2. Rule out acute rheumatic fever (ARF).
Careful auscultation for a murmur should be done for every child. If the child has a history of polymigratory joint complaints, frank chorea, erythema nodosum or erythema migrans, it is imperative that the child be referred to a pediatric cardiologist to assess for rheumatic carditis.⁵

3. Check for other infections.
Evaluate for other infections as indicated by the child’s history and physical. Check mycoplasma IgM for active mycoplasma infection. IgG is not particularly helpful. Mycoplasma pneumonia titers are less accurate than Mycoplasma PCR. Recurrence of PANS/PANDAS symptoms may also be precipitated by viral illnesses. A CBC with differential may be used to check for other infections.

If urinary symptoms are present, obtain a urinalysis. In children with PANS/PANDAS, a negative result is common and may suggest that symptoms such as urinary urgency, frequency or secondary enuresis are manifestations of PANS/PANDAS, rather than a urinary tract infection. If the child has been on antibiotic therapy, evaluate for Candida Albicans as it can exacerbate symptoms.

4. Exclude non-infectious triggers.
Non-infectious triggers, such as drug ingestion or exposure to toxins (e.g., heavy metals or other environmental agents), should be ruled out based on clinical context and history.

5. Refer to a specialist.
Primary care providers can typically diagnose and treat PANS/PANDAS. Children with a moderate to severe onset or a complex presentation may require referral to an experienced multi-disciplinary team or a provider with expertise in PANS/PANDAS. Refer parents and caregivers to a pediatric psychologist to begin CBT/ERP once appropriate and consider other relevant specialists as needed, such as cardiology, rheumatology, immunology, neurology, sleep medicine, otolaryngology, and/or infectious disease.