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What are PANS/PANDAS?

     

PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infection) are conditions that can lead to the sudden psychiatric symptoms in children. The conditions are triggered by an infection. The PANDAS Network* describes PANS as when “a misdirected immune response results in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life changing symptoms such as OCD, severe restrictive eating, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, and more.”

PANDAS is a subset of PANS when the specific trigger is strep infection that leads to sudden symptoms of obsessive-compulsive disorder (OCD) or tics along with other symptoms. PANDAS was first identified in the 1980s and the broader condition of PANS was introduced in 2012.

PANS/PANDAS are usually seen in children age 3 to 12. The PANDAS Network estimates that one in 200 children are affected by PANS/PANDAS, though the exact number is not known. Children with PANS/PANDAS have ups and downs in the level of their symptoms. Symptoms usually appear or worsen suddenly and then there is a slow, gradual improvement. If they get another infection, symptoms can suddenly worsen again.

In July 2017, an expert panel of clinicians and researchers published comprehensive guidelines for treatment of PANS and PANDAS. The treatment guidelines released by the PANS Research Consortium and published in the Journal of Child and Adolescent Psychopharmacology focus on three areas:

  1. Psychiatric and behavioral interventions to address obsessive-compulsive symptoms, eating restrictions, anxiety, irritability and more.
  2. Therapies targeting immune system problems (such as nonsteroidal anti-inflammatory drugs (NSAIDs) or oral corticosteroids.)
  3. Treatment and prevention of the strep and other infections that underlie PANS/PANDAS.

The behavior symptoms that appear suddenly often lead parents to seek psychological or psychiatric services. However, the guidelines call for all patients to have a full medical evaluation. They recommend a complete medical and psychiatric history and physical examination if PANS is suspected. This includes a psychiatric evaluation, an infectious disease evaluation, a neurologic assessment and a genetic evaluation. The guidelines also call for treatment of infection/inflammation and psychiatric symptoms at the same time.

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Research suggests that psychiatric symptoms of PANS/PANDAS such as depression, anxiety and OCD can be treated in the same way the symptoms are treated in someone without PANS/PANDAS. This can include psychological and behavioral therapies, supportive therapies, medication and education. For example, cognitive behavior therapy and parent training are typically used to help children with OCD symptoms. However, the guidelines caution that children with PANS/PANDAS may be more sensitive to side effects of psychiatric medications, and they recommend starting medications at lower than typical doses.

The expert panel notes that experiences among children with PANS/PANDAS can vary a great deal over time. Antibiotic and immune-based treatments can often significantly reduce symptoms or even eliminate them. However, in some cases symptoms continue. The needs of children with PANS/PANDAS can “change day-to-day and month-to-month” and the guidelines suggest that most children will need some type of accommodations at school.

To find a doctor familiar with PANS/PANDAS see the International OCD Foundation or the PANDAS Network.

Resources and References

*PANDAS Network www.pandasnetwork.org (The PANDAS Network is a nonprofit working to raise awareness and improve treatment for PANS/PANDAS and is a National Institutes of Mental Health, National Outreach Partner.)

Child Mind Institute, Parents Guide to PANS and PANDAS

National Institute of Mental Health PANDAS Frequently Asked Questions

Journal of Child and Adolescent Psychopharmacology. July 2017.

     

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