Introduction: SARS-CoV-2 (COVID-19) infection has been implicated in the onset of neuropsychiatric symptoms in adults and children. While outcomes of COVID-19 infection and vaccination have been tracked in the general pediatric population, little is known of their impact on children with preexisting neuropsychiatric syndromes, including pediatric acute-onset neuropsychiatric syndrome (PANS) and pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS). The aim of this study is to understand the prevalence and severity of COVID-19 symptoms and PANS/PANDAS symptoms following COVID-19 infection or vaccination in children with PANS/PANDAS. Methods: We analyzed retrospective COVID-19 survey data from caregivers of youth with PANS/PANDAS at Massachusetts General Hospital (MGH; n = 57) and the International PANS Registry (IPR; n = 478). Surveys were conducted online between late 2021 and early 2022 to collect COVID-19 infection and vaccination histories, side effects, and changes in PANS/PANDAS symptoms. Descriptive results are reported, stratified by case and sibling groups within the IPR sample. Results: Among patients with test-confirmed COVID-19 (MGH: n = 20, IPR: n = 65 cases, n = 16 siblings), mild/minor COVID-19 symptoms were common (62-75%). All patients with preexisting PANS/PANDAS-related symptoms at the time of COVID-19 infection experienced an exacerbation of PANS/PANDAS symptoms, while remitted patients did not report any PANS/PANDAS symptoms. Following the first COVID-19 vaccine dose (MGH: n = 45, IPR: n = 150 cases, n = 44 siblings), fatigue was the predominant side effect (30-56%). Most patients did not report new (59-81%) or worsened (71-82%) PANS symptoms post-vaccination, irrespective of symptomatic status at vaccination. Vaccine hesitancy often stemmed from concerns that the vaccination would cause an exacerbation of PANS/PANDAS symptoms. Conclusions: In two samples of children with PANS/PANDAS, symptoms of COVID-19 following infection and vaccination were common and generally mild to moderate. Children experiencing PANS/PANDAS symptoms at the time of COVID-19 infection experienced an increase in PANS/PANDAS symptom severity.
Keywords: COVID-19 vaccines; SARS-CoV-2; neuropsychiatric conditions; observational study; pediatric acute-onset neuropsychiatric syndrome; pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections.