Implementing dietary changes with children affected by PANS/PANDAS

PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome) is characterized by acute-onset of obsessive-compulsive disorder (OCD) or disordered eating, as well as anxiety, tics, and developmental regressions, among other neuropsychiatric symptoms, after an infection or exposure to environmental triggers. PANS symptoms, which can be chronic and fluctuate in severity for several years, develop because of an aggressive autoimmune reaction to brain structures. Studies suggest that dietary changes, such as replacing industrialized foods with organic or eliminating gluten or dairy, can be important for autoimmune conditions. This mixed-method study examines dietary changes implemented as part of treatment for PANS and PANDAS (Pediatric Autoimmune Neuropsychiatric Syndrome Associated with Streptococcus), which is a subset of PANS, through in-depth interviews with families and clinicians and a caregiver survey. 64.7% of the 467 survey participants indicated that a healthcare provider recommended dietary changes as part of PANS/PANDAS treatment. 55.7% of the families did implement dietary changes and 69.6% reported at least one diet to be somewhat effective in helping with PANS/PANDAS symptoms, with 36% reporting dietary changes to be very effective, particularly gluten-free and sugar-free diets. However, some parents and clinicians highlighted children's resistance to new diets and concerns about worsening OCD and food restrictive disorders as barriers to implementing dietary changes.