Quality of Life in Families With a Young Child With Pediatric Autoimmune Neuropsychiatric Disorder Associated With Streptococcal Infection (PANDAS)

Abstract

Date Presented 04/05/19 PANDAS is the abrupt onset of OCD or tics after streptococcal infection in a formerly healthy child. We used qualitative phenomenology to explore family quality of life (FQOL) in six families with a child who developed PANDAS in early childhood. Data were collected through interviews, which were transcribed and analyzed through a rigorous inductive process. Results indicate that PANDAS severely impacts FQOL, and OT's awareness of PANDAS may be key to supporting the child and family. Primary Author and Speaker: Barbara Demchick Additional Authors and Speakers: Julia Ehler, Shelly Marramar, Alison Mills, Amanda Nuneviller

Sensory processing in children with Paediatric Acute‐onset Neuropsychiatric Syndrome

“…This indicates only mild to moderate impairments in sensory functioning relative to peers (Parham & Ecker, 2007). This finding is in contrast with those of Tona et al (2017) and Demchick et al (2019) who reported cases of severe disturbances in sensory reactivity, specifically related to tactile sensitivities that rendered clothing intolerable. For example, a participant in Demchick et al's (2019, p. 191) study on family quality of life in the context of raising a child with PANS stated that it took a parent '…three hours to get out of the house due to her daughter's severe sensory sensitivity with clothing …'.…”

“…6) noted that their child with PANS was '…unable to wear any clothes for days because of extreme tactile defensiveness …'. The difference between our findings and those reported by Tona et al (2017) and Demchick et al (2019) suggests that there is an inherent variability in the sensory experiences of children during PANS exacerbations. Some children may experience only mild sensory symptoms during periods of exacerbation, whereas others may experience sensory symptoms that are severe and incapacitating.…”

“…Similarly, some periods of exacerbation may result in more severe symptoms than others. Parents may be more likely to recall and report more extreme exacerbation experiences in retrospective studies such as those conducted by Demchick et al (2019) and Tona et al (2017). As our current study indicates, children with definite changes in sensory processing that are not extreme should not be overlooked in evaluation and intervention.…”

“…In a non‐standardised online survey of parents of 111 children with PANS, the investigators found that most participants reported some degree of sensory over‐reactivity, including increased sensitivity to touch, and to a lesser degree with taste, smell, proprioception, hearing, vision, and vestibular senses (Tona et al, 2017). Demchick et al's (2019) qualitative, phenomenological study of six families, examining family quality of life in the context of raising children with PANS aged from 7 to 13 years, also reported challenges with sensory over‐reactivity including challenges with dressing due to tactile hypersensitivity. Gromark et al (2019) conducted a systematic evaluation of 45 Swedish children aged between 3 and 13 years who met the PANS diagnostic criteria and found that half of their study participants reported sensory over‐reactivity based on their developmental history, including hypersensitivity to touch (including clothing), sounds, and light.…”