Abstract

To examine caregiver satisfaction with treatments for pediatric autoimmune neuropsychiatric disorder associated with streptococcus (PANDAS) and how symptom frequency changes over time.A list was created for PANDAS subjects seen at the Georgetown Pediatric Otolaryngology clinic from 2015 to 2018. Questionnaires were distributed to caregivers able to be contacted; 62% responded (n = 60). Subjects were placed in groups based on treatments reported: tonsillectomy and adenoidectomy (T&A, n = 28), T&A and intravenous immunoglobulin (IVIG, n = 22), or nonsurgical treatment(s) (n = 10). Caregivers reported frequencies for each of 10 associated symptoms from time of treatment to 12 months and also expressed their satisfaction with treatment.Patients were treated with antibiotics (n = 60, 100%), T&A (83.3%), IVIG (40%), Rituximab (15%), steroids (20%), and/or plasma exchange (10%). Caregivers for 66% (n = 33) of surgical patients identified T&A as the most effective treatment, and 80% would choose the operation again. No difference in median caregiver satisfaction level was found among the groups (n = 0.196). There was no significant difference in frequency for any of the symptoms (all p > 0.05) except choreiform movement (p = 0.0296).Caregivers reported a decreasing frequency of symptoms over time regardless of treatment and had no difference in satisfaction. T&A was the most preferred treatment and the most impactful on symptoms for surgical patients. Given the challenges of immunologic therapies, T&A in combination with antibiotics should be considered as an early intervention for PANDAS.

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