S3 E24: Dr. Sue Swedo Talks About the Past 40 Years of PANS/PANDAS
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In this episode, we trace Dr. Swedo’s path from pediatrics to the National Institute of Mental Health and the early clinical observations that linked Sydenham chorea, rheumatic fever, and obsessive-compulsive disorder. Along the way, she explains why OCD is often hidden for years unless clinicians ask the right questions, and why structured checklists can change everything for families searching for answers. We also confront the reality of scientific pushback: how skepticism shaped stronger research, why medicine can take decades to accept an infectious or autoimmune mechanism, and what the autoimmune encephalitis era has taught the wider field of immunopsychiatry.
Then we look forward. Dr. Swedo lays out the research roadmap she wants to see now: multi-center collaboration across major PANDAS and PANS clinics, prospective studies that capture kids within days of symptom onset, better testing for rheumatogenic and potentially “pandasogenic” strep strains, and smarter use of models to evaluate immunomodulating treatments like IVIG and plasmapheresis. We also talk about safety and the urgent need to take self-harm intrusions seriously, especially when inflammation, impulse control changes, and demoralization collide.
If you care about PANDAS, PANS, pediatric OCD, tics, neuroinflammation, autoimmune brain disease, or the future of mental health diagnosis, this conversation will give you history, clarity, and practical next questions. Subscribe, share this with someone who needs it, and leave a review so more families and clinicians can find the science, faster.
Disclaimer: The views and opinions expressed in this program are those of the speakers and do not necessarily reflect the views or positions of any entities they represent.
Credits: Music by Kingsley Durant from his "Convertible" album
To learn more about PANDAS and PANS and The Alex Manfull Fund, visit our website: TheAlexManfullFund.org
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