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Children's PANS/PANDAS Care Under Threat
26 Oct
Summary
- A specialized children's program for rare PANS/PANDAS is closing.
- Families fear abandonment and lack of adequate care.
- Advocates demand answers and an independent review.
A specialized program at Mass General Brigham (MGB) dedicated to treating children with PANS/PANDAS conditions is scheduled to close in January. These conditions cause abrupt and severe neuropsychiatric symptoms, including anxiety and tics, often following common infections. Hundreds of patients have relied on this program for critical medical and psychiatric care.
Families and advocacy groups are expressing deep concern and anger over the planned closure. They cite the hospital's stated reasons for closing, related to multidisciplinary services, as insufficient. An advocacy group has formally requested the state attorney general's office to review the closure, raising questions about patient abandonment.
The PANS/PANDAS diagnosis remains a subject of debate in the medical community, with ongoing research into its causes. While the American Academy of Pediatrics acknowledges PANS as likely valid, it calls for more research and has raised concerns about certain treatments. Massachusetts law mandates insurance coverage for PANS/PANDAS care.
MGB has stated its commitment to assisting patients in finding alternative care options and noted that care can still be accessed through other hospital departments. However, parents report significant challenges in finding comparable multidisciplinary care, leading many to seek options far from home.
