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OBJECTIVE. Pediatric acute-onset neuropsychiatric syndrome (PANS) includes pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections and involves sudden-onset neuropsychiatric symptoms, including obsessions, compulsions, sensory difficulties, and dysgraphia after infection or other triggers. Our objective was to identify problems with areas of occupation, body functions, and performance skills during exacerbations.
METHOD. In this online retrospective study, based on the Occupational Therapy Practice Framework: Domain and Process (2nd ed.), we surveyed parents of 111 children with PANS.
RESULTS. Activities of daily living, math, handwriting, extracurricular activities, free play, organized sports, community and family social participation, higher level thinking, attention, memory, sequencing, emotional coping, and energy and drive were commonly affected during exacerbations. During exacerbations, children often required assistance and adaptation to remain functional or were unable to function at a typical level.
CONCLUSION. Children with PANS present with pervasive occupational performance needs during exacerbation. Children and families may benefit from accommodations to maximize function during this turbulent period.
Children with pediatric acute-onset neuropsychiatrie syndrome (PANS) experience sudden-onset neuropsychiatric symptoms, including obsessivecompulsive behaviors and restricted eating, after infection, environmental, or metabolic triggers (Murphy, Kurlan, & Leckman, 2010; Swedo, Leckman, & Rose, 2012). Additional problems may include attention problems, sensory defensiveness, dysgraphia, math regression, urinary frequency, and emotional lability (Swedo et al., 2012). The National Institute of Mental Health has taken a strong interest in PANS, and its director called this syndrome a "frontier" in mental health (Insel, 2010). To date, there have been no published studies of the full range of occupational performance limitations in children with PANS, making this a frontier for occupational therapy as well.
Background
In the mid-1980s and early 1990s, Swedo and colleagues (1989) identified ongoing obsessive-compulsive disorder (OCD) behaviors in children who recovered from Sydenham's chorea (SC), an autoimmune neurological disorder involving involuntary movements after Group A Streptococcus (GAS) infections, such as strep throat. In SC, antibodies produced to fight GAS are thought to cross the bloodbrain barrier and react with basal ganglia neurons, triggering neurochemicals including calcium/calmodulin-dependent protein kinase II (CaM kinase II), which is involved in dopamine production (Kirvan, Swedo, Heuser, & Cunningham, 2003).
In 1995, Allen, Leonard, and Swedo identified 4 boys with sudden-onset OCD and tics after either GAS or viral infection who improved with immune-modulating treatments, and...