American Academy of Pediatrics Offers Guidance on Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS)

A baffling constellation of neuropsychiatric disorders often blamed on an infection is a real diagnosis but challenging due to lack of longitudinal high-quality research.

ITASCA, IL--The American Academy of Pediatrics in a new clinical report urges compassion and robust research into the condition known as PANS –or pediatric autoimmune neuropsychiatric disorders – acknowledging the diagnosis remains challenging for families and physicians seeking answers.

Evidence is sparse regarding the causes and treatment for PANS and a subset category known as PANDAS associated with Group A streptococcal (GAS) infections -- but the symptoms and severity of the condition are very real and painful for families seeking care, according to the AAP.

The clinical report, “Guidance for the Clinician in Rendering Pediatric Care Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS),” will be published online Dec. 16, 2024, in   Pediatrics. The AAP Board of Directors published the clinical report after assembling an expert panel of experienced clinicians from relevant subspecialty areas to guide its development.

“This condition can be distressing and even life-changing for a family. Symptoms such as obsessive-compulsive behaviors, tics or anxiety appear very quickly-- seemingly overnight,” said AAP President Ben Hoffman, MD, FAAP. “The guidance in this report provides clarity on where we can go from here to collaborate and support additional research. AAP urges pediatricians to partner with families and work with specialists and multidisciplinary teams to support diagnosis and identify evidence-based options for treatment.”

The cause of PANS is unknown. Without well-established and evidence-based treatments for PANS, physicians acknowledge that it can be challenging for families who seek help.

The most distinctive characteristic of both PANS and PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections) is the dramatic and abrupt onset of obsessive-compulsive disorder (OCD) or severely restricted food intake. Other symptoms may include the abrupt onset of anxiety, depression, irritability, regression, deterioration in school performance, sensory or motor abnormalities, or somatic signs and symptoms.

Psychiatric and behavioral interventions such as cognitive behavioral therapy are recommended as first-line treatments for many symptoms. Antibiotics are only recommended if a child has both clinical symptoms and a positive test for group A strep infection.

Other recommendations:

• Doctors should conduct a thorough patient and family history, physical and psychiatric exam. However, laboratory and imaging workup should be reserved for patients suspected of conditions like autoimmune encephalitis. A phased approach can help avoid a child having to endure a major diagnostic odyssey.
• Doctors should be familiar with psychiatric syndromes in children and the ages they typically present, including anxiety disorders, tics, and OCD. These are more likely to be a primary psychiatric disorder that is unrelated to PANS.
• AAP does not recommend universal testing of all cases of acute onset neuropsychiatric symptoms for group A strep. The data are not strong enough to support the benefits of such universal testing, and there is potential harm in the overuse of antibiotics. AAP does not recommend long-term use of antibiotics.
• The report lists a number of tests that are not recommended due to lack of evidence, high rates of false positives, and inability to lead to clear treatment plans. 
  Children should receive health care that is delivered in a medical home and involves a team of caregivers, care that is family-centered, and that includes resources and support as well as treatment.

“Until we know more, AAP recommends a deliberate, cautious approach, grounded in evidence, and focused on helping children who have symptoms of possible PANS,” Dr. Hoffman said. “Partnering with families and subspecialists is essential. We all want to help these children thrive and get back to their school and extracurricular activities.”

To request a copy of the embargoed clinical report or an interview with an expert, contact AAP Public Affairs.

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The American Academy of Pediatrics is an organization of 67,000 primary care pediatricians, pediatric medical subspecialists and pediatric surgical specialists dedicated to the health, safety and well-being of infants, children, adolescents and young adults.