PANDAS: When Medicine Doesn’t Help
In severe, refractory cases of PANDAS in which antibiotics, steroids, NSAIDs, and other medicines have not mitigated symptoms, some clinicians have been turning to plasmapheresis (plasma exchange) and intravenous immunoglobulin therapy (IVIG). In theory, plasma exchange works by removing all antibodies and replacing them with antibodies from healthy donors. Meanwhile, IVIG theoretically deliveries antibodies from healthy donors that dilute the “bad” antibodies of a child with PANDAS. But it is not known how either treatment actually works.
It’s also not known with certainty whether they work. Some case studies indicate they do, and a placebo-controlled double-blind study conducted before 2000 suggested that both IVIG and plasma exchange reduced OCD symptoms in children with PANDAS, by 45% and 58% respectively (Perlmutter SJ et al, Lancet 1999;354(9185):1153–1158).
But Dr. Greenberg’s colleague, Kyle Williams, MD, PhD, of the Pediatric Neuropsychiatry and Immunology Program at Massachusetts General Hospital, found more recently that IVIG failed to demonstrate any benefit over placebo (Williams KA et al, JAACAP 2016;55(10):860–867.e2).
Given the uncertainties about the role of these treatment approaches, anyone considering plasma exchange or IVIG should make the decision in consultation with an immunologist or infectious disease expert.
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