‘These doctors don’t believe in PANS’: Confronting uncertainty and a collapsing model of medical care

LaRusso, M. & Abadía-Barrero, C. (2021). “These doctors don’t believe in PANS”: Confronting Uncertainty and a Collapsing Model of Medical Care. Chapter 9, pp. 197-216. In Montesi, Laura and Calestani, Melania (Eds.) Managing Chronicity in Unequal States. Ethnographic perspectives on caring. University College of London Press, ISBN. 9781800080287.

“This chapter presents ethnographic research in the United States with families with children affected by PANS, a relatively new condition that is defying the disciplinary borders between infectious diseases, environmental causes of immune dysregulation, neurological problems and developmental psychopathology in paediatrics care. PANS opens a window to examine critically why the hegemony of a biomedical model of care structured around sub- specialties is collapsing. In facing the uncertainty of the new condition, families’ approach to care emphasises the need for comprehensiveness and immediacy; however, biomedicine seems to be ill- equipped to meet those needs. Rather than offering support and facilitating a path to recovery, clinicians often challenge the knowledge of families, negate PANS as a viable diagnosis, and delay adequate care, which results in increased harm to both the child and the family. Furthermore, the chapter shows how families incur significant debt by trying several therapeutic options that are not covered by insurance. This signals how the inadequacy of the social welfare and broade rsafety nets in the United States further magnify children’s and parents’ suffering.”

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