Untangling PANDAS & PANS: Conversations about Infection-Associated, Immune-Mediated Neuropsychiatric Disorders

S2 E19: Rheumatic Clues To Understanding the PANDAS/PANS Puzzle -- A Conversation with Dr. J. Patrick Whelan

A sore throat that ends in compulsions, tics, and a child who suddenly can’t sleep or attend school sounds improbable—until you hear a pediatric rheumatologist walk through the biology. Dr. J. Patrick Whelan of UCLA sits down with Dr. Susan Manfull, Executive Director of The Alex Manfull Fund, to unpack how infections and the immune system can collide with brain function, producing abrupt-onset OCD, motor and vocal tics, restricted eating, and anxiety that look psychiatric but respond to immunomodulatory treatments. Drawing from a variety of sources, including the history of rheumatic fever, the Lancefield classification of streptococci, and modern cases of Multisystem Inflammatory Syndrome in Children (MIS-C). Dr. Whelan explains why PANDAS and PANS challenge old categories and demand a broader clinical lens.We dive into innate versus adaptive immunity, what “autoinflammatory” and “autoimmune” really mean, and why so many affected kids also show signs of immunodeficiency. If routine tests like ASO and anti–DNase B come back normal, does that rule out strep’s role? Not necessarily. Whelan shares how expanded antibody panels, trial responses to antibiotics or anti-inflammatories, and careful history-taking can reveal an immune trigger that standard workups miss. He also outlines the practical steps that matter right now: restore sleep, get moving, stabilize nutrition, and build companionship—simple interventions that reduce pain amplification and calm a dysregulated nervous system. Finally, we talk about why “listening to the patient” often illuminates key clues to understanding the case.  If you care about pediatric mental health, infection-associated neuroimmune disorders, or how medicine evolves when data and curiosity meet, you’ll find both science and solace here.If this resonates, follow the show, share with someone who needs it, and leave a review to help more families and clinicians find these insights.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" albumTo learn more about PANDAS and PANS and The Alex Manfull Fund, visit our website: TheAlexManfullFund.orgFollow us on:FacebookInstagramLinkedIn

S2 E18: My Conversation with Dr. Mikki Tal about How She Is Revolutionizing Our Understanding of Infection-Associated Chronic Illness

What makes some people vulnerable to devastating chronic illness after infections that most recover from easily? Dr. Michal "Mikki" Tal, pioneering immunoengineer at MIT, is tackling this question through her groundbreaking Maestro study - the largest clinical research project currently underway at the prestigious institution.Personal tragedy fuels Dr. Tal's scientific mission. After losing both an uncle to HIV/AIDS and a cousin to meningococcal meningitis, she developed a profound respect for infectious diseases and determination to understand immune system dysfunction. Now, her research examines why infection-associated chronic illnesses like Long COVID and chronic Lyme disease disproportionately affect women, what biological mechanisms prevent recovery, and how we might predict who's at risk.The conversation explores fascinating biological concepts, including how our immune cells recognize "eat me" versus "don't eat me" signals, and how some pathogens have evolved to manipulate these systems. Dr. Tal introduces her powerful metaphor: "If you took a bacterial road to Rome or a viral road to Rome, once you're in Rome, does it matter anymore how you got there?" This question frames her approach to understanding whether treatment should focus on the triggering infection or the resulting immune dysfunction.Dr. Tal advocates for a revolutionary "systems medicine" approach that bridges traditional medical specialties to address complex conditions. Her research employs cutting-edge techniques to objectively measure everything from blood vessel appearance to cognitive function, seeking patterns that might predict or explain chronic illness development. Most exciting are the preliminary findings showing significant cognitive impacts, particularly in reaction time, that could immediately inform clinical care.The Maestro study continues seeking participants, particularly those newly diagnosed with Lyme disease. By examining genetics, microbiome, immune responses, and countless other variables simultaneously, Dr. Tal hopes to finally unlock the mystery of why some people can't bounce back from infections - and how we might help them recover. If you've recently been diagnosed with Lyme disease, consider participating in this groundbreaking research that could change medicine's understanding of chronic illness forever.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" albumTo learn more about PANDAS and PANS and The Alex Manfull Fund, visit our website: TheAlexManfullFund.orgFollow us on:FacebookInstagramLinkedIn

S2 E17: Sheilah Gauch Offers Eight Tips for Students with PANS and their Parents on How to Successfully Transition to College...or Anywhere Else

Transitioning to college marks a significant milestone for any young adult, but for those with PANS/PANDAS, this journey demands unique preparation and understanding. In this illuminating conversation, Dr. Susan Manfull welcomes Sheila Gauch, Principal and Clinical Director of Dearborn Academy, who brings both professional expertise and profound personal experience to the table.Gauch, whose own college experience as an all-American swimmer was derailed by what she believes now was undiagnosed PANS symptoms, shares eight critical strategies each—for parents and for students—that transform the college transition from daunting to doable. Her guidance stems from both professional wisdom and her journey supporting two college-age children with PANS.For parents, the process begins with helping their children truly understand their condition's immune-mediated nature, recognizing how different it is from primary psychiatric disorders. This knowledge becomes crucial when students need to advocate for themselves in college health centers where PANS/PANDAS awareness may be limited. Equally important is parents understanding their own stress responses, often shaped by years of hypervigilance and advocacy."I think caregiver stress and trauma, particularly with PANS families, is so ingrained," Gauch explains, comparing it to "a frog in a pot of boiling water—you don't realize you're boiling alive." Learning to manage this response becomes essential when letting children navigate college independently.For students, success hinges on understanding how stress triggers inflammation, potentially causing symptom flares. They must become attuned to their bodies, practice effective coping strategies, and embrace self-advocacy—particularly when accessing disability support services. Perhaps most challenging is learning to accept imperfection and mistakes, especially difficult for those with perfectionistic OCD tendencies.Gauch also introduces the Everest Program, a comprehensive coaching service helping students bridge the gap between high school structure and collegiate independence through academic, clinical, and transition support.Whether you're a parent preparing to launch your child or a student planning your college journey, this episode offers practical wisdom for navigating this significant transition while managing PANS/PANDAS. Ready to build that bridge to college success? Listen now and discover how to transform challenges into stepping stones toward independence.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" albumTo learn more about PANDAS and PANS and The Alex Manfull Fund, visit our website: TheAlexManfullFund.orgFollow us on:FacebookInstagramLinkedIn

S2 E16: Dr. Andrew Baumel: One Pediatrician's Journey to Include Mild Cases of PANDAS/PANS into his Everyday Practice

Dr. Andrew Baumel's story reveals how curiosity, compassion, and clinical observation can lead to breakthrough care for children suffering from immune-mediated neuropsychiatric disorders.After 18 years as a traditional pediatrician, Dr. Baumel's professional trajectory changed dramatically when a parent asked if he knew anything about PANDAS. Though initially somewhat skeptical, attending an educational lecture with the parent in 2014 convinced him this was a genuine medical condition affecting children's brains following infections. Fast forward, he has now treated over 300 patients with mild to moderate cases of PANDAS and PANS using straightforward medical approaches in his regular pediatric practice.Dr. Baumel shares fascinating clinical insights, including his identification of "protopans" – early, limited symptoms following infections that, when treated promptly, appears to prevent progression to full-blown disorders. "I have a regular practice of 1500 kids, ages 0 to 23 years. I just incorporate these [mild cases of] PANS/PANDAS into my regular practice as my regular patients. This is doable," Dr Baumel said.Dr. Baumel offers thoughtful perspective on why acceptance of PANDAS/PANS has been slow, drawing parallels to historical medical discoveries that initially faced skepticism before becoming standard practice.Link to video of 2014 PANDAS Doctor's Breakfast that Dr. Baumel mentioned in this podcast: https://aspire.care/videos/qa-breakfast-for-doctors-featuring-national-pans-pandas-expert-panel-nepans-2014/  (Aspire website)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" albumTo learn more about PANDAS and PANS and The Alex Manfull Fund, visit our website: TheAlexManfullFund.orgFollow us on:FacebookInstagramLinkedIn

S2 E15: Science Under Siege: A conversation with Dr. Uğur Akcan and Dr. Dritan Agalliu about PANDAS Research, NIH Cuts, and the Power of Community

How does a common strep infection become a brain disorder? Dr. Uğur Akcan's journey from Istanbul to the cutting edge of PANDAS research with Dr. Dritan Agalliu reveals the fascinating intersection of immune system and brain function that could transform how we understand and treat neuropsychiatric disorders.In this captivating conversation, Dr. Akcan shares his research path from studying complement levels in patients with bipolar disorder to pioneering work on the blood-brain barrier, ultimately contributing to groundbreaking discoveries about PANDAS and PANS in the Agalliu Lab at Columbia University. With remarkable clarity, he explains how mutations in the RxRA gene may explain why only some children develop these disorders after streptococcal infections, and how microglia—the brain's immune cells—fail to properly regulate neuroinflammation when this gene is compromised.The discussion takes an unexpected turn as we learn how Dr. Akcan's vital research was nearly derailed in March 2025 by sudden NIH funding cuts directed by the Trump administration at Columbia. In a dramatic development, the PANDAS/PANS community rallied to save his position through a GoFundMe campaign, demonstrating the powerful connection between affected families and researchers working to solve this medical mystery.Beyond the scientific discoveries, Dr. Akcan's personal story reflects the qualities that drive medical breakthroughs: curiosity about why peripheral infections trigger brain symptoms, perseverance through research challenges, and passion for helping those affected by these devastating disorders. His development of a 3D blood-brain barrier model and investigations into Th17 cells represent frontier science with real-world implications for treatment.When Dr. Akcan is not in the lab, you may find him watching football, rooting for his favorite team, Galatasaray, or spending time with his wife and young child.Dr. Agalliu also joins me to discuss how the NIH funding cuts have affected his lab.Support Dr. Akcan's  crucial PANDAS/PANS research by visiting this  GoFundMe page and join the community working to unravel PANDAS and PANS. Your contribution could help transform our understanding of how infections trigger neuropsychiatric symptoms and lead to better treatments for children, adolescents, and young adults suffering from these disorders. Both researchers express deep gratitude to supporters of this work. The goal is to raise $100,000 to cover Dr Akcan's annual salary and benefits --  only $15, 602 left!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" albumTo learn more about PANDAS and PANS and The Alex Manfull Fund, visit our website: TheAlexManfullFund.orgFollow us on:FacebookInstagramLinkedIn