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

Susan Newman Manfull, PhD

Hello and welcome to Untangling PANDAS & PANS, a podcast about two relatively unknown medical disorders characterized by the sudden and dramatic onset of obsessions and compulsions, vocal or motor tics, or restricted eating behavior -- and a whole host of other symptoms -- following strep or other bacterial or viral infection. Sometimes overnight.   I have the privilege of interviewing some of the top researchers and clinicians in the rapidly growing field of Infection-Associated, Immune-Mediated Neuropsychiatric Disorders. That’s a mouthful of words that encompasses the strangely named disorders, PANDAS and PANS.My name is Dr. Susan Manfull. I am a social psychologist, the Executive Director of The Alex Manfull Fund, and the mother of Alex Manfull, who died at 26 years old due to PANDAS, a neuropsychiatric disorder my husband and I knew next to nothing about, certainly not that our daughter could die from it.PANDAS is an acronym for “Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus.” This disorder, first defined in 1998 at the National Institute of Mental Health, describes the acute and dramatic onset of obsessions and compulsions and/or motor or vocal tics as well as a whole host of neuropsychiatric symptoms in temporal association to a Group A streptococcal infection.  PANS, which stands for Pediatric Acute-onset Neuropsychiatric Syndrome, refers to a similar symptom presentation -- with obsessions and compulsions or restricted eating being the cardinal symptoms -- due to a broader category of triggers (typically bacterial or  viral infections). Both are thought to stem from a dysregulated immune system, probably leading to an over-production of autoantibodies and concomitant excess brain inflammation, particularly in the basal ganglia. Symptoms vary from person to person and range in  severity from mild to severe, and generally have a relapsing and remitting course. With early recognition and correct treatment, these disorders can be successfully treated. Today, it is no longer viewed as a diagnosis limited to the pediatric population.Please stay tuned after each episode to listen to a one-minute public service announcement about PANDAS & PANS and The Alex Manfull Fund.  To learn more, please visit our website: TheAlexManfullFund.org.This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition.

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

    5天前

    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" album To learn more about PANDAS and PANS and The Alex Manfull Fund, visit our website: TheAlexManfullFund.org Follow us on: Facebook Instagram LinkedIn

    1 小时 19 分钟
  2. S2 E16: Dr. Andrew Baumel: One Pediatrician's Journey to Include Mild Cases of PANDAS/PANS into his Everyday Practice

    7月27日

    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" album To learn more about PANDAS and PANS and The Alex Manfull Fund, visit our website: TheAlexManfullFund.org Follow us on: Facebook Instagram LinkedIn

    46 分钟
  3. 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

    6月30日

    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" album To learn more about PANDAS and PANS and The Alex Manfull Fund, visit our website: TheAlexManfullFund.org Follow us on: Facebook Instagram LinkedIn

    1 小时 32 分钟
  4. S2 E13: Understanding the Role of a Psychologist in PANDAS and PANS: A Conversation with Dr. Sarah O'Dor

    4月27日

    S2 E13: Understanding the Role of a Psychologist in PANDAS and PANS: A Conversation with Dr. Sarah O'Dor

    In this illuminating conversation, Dr. Sarah O'Dor—Harvard instructor and Director of Research at Massachusetts General Hospital's PANDAS Clinic—reveals how strep infections and other triggers can cause sudden, dramatic psychiatric symptoms in children and young adults. Dr. O'Dor paints a vivid picture of PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infection) and PANS (Pediatric Acute-onset Neuropsychiatric Syndrome), conditions where infections trigger obsessive-compulsive behaviors, tics, restricted eating, and a host of other psychiatric, cognitive, emotional, somatic, and medical symptoms. Through the compelling case of "Ms. K," a six-year-old who developed severe handwashing compulsions following a strep infection, Dr. O'Dor demonstrates how these conditions often go misdiagnosed as traditional psychiatric disorders. The conversation explores the critical role psychologists can play in recognizing these disorders and providing effective treatment. Dr. O'Dor describes how cognitive-behavioral therapy can be adapted for these patients, how families are affected by sudden behavioral changes in their children, and how psychologists can support not just the child but the entire family system. Also very importantly, she emphasizes the need for collaboration between mental health professionals and medical specialists—a multidisciplinary approach reflecting the complex nature of these disorders.  For parents, clinicians, and anyone interested in the fascinating intersection between immunology and mental health, this episode offers a roadmap to better understanding, earlier diagnosis, and more effective treatment. The discussion culminates with reflections on a growing paradigm shift in psychiatry—one that increasingly recognizes the role immune function plays in mental health. Whether you're a healthcare provider, a parent concerned about your child's sudden behavioral changes, or simply curious about emerging understandings of brain-immune connections, this episode will transform how you think about certain psychiatric symptoms.  To read the article reference in the podcast, click here. 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 Follow us on: Facebook Instagram LinkedIn

    1 小时 15 分钟
  5. S2 E12: The Neuropathology of PANDAS/PANS: Dr. Brent Harris Talks about the POND Brain Bank

    3月31日

    S2 E12: The Neuropathology of PANDAS/PANS: Dr. Brent Harris Talks about the POND Brain Bank

    This podcast episode features an interview with Dr. Brent Harris, the Director of Neuropathology at Georgetown University where he wears many hats, including overseeing the Georgetown Brain Bank. In 2020, he accepted the brain of Alex Manfull who had died from complications due to PANDAS and, eventually, with the help of The Alex Manfull Fund, established the POND Brain Bank for brains and brain tissue from individuals who had been diagnosed with "PANDAS/PANS and Other Neuroimmune Disorders."  Dr. Harris talks about neuropathology, the role of brain banks in facilitating research on brain disorders, and findings from the first published clinicopathologic case report of a young adult diagnosed with PANDAS. He explains how gliosis, a marker of brain injury found in that case, can occur after a neurological insult and how it might be reversible in some cases; it is not a condition expected to be observed in healthy 26-year-old individuals.  Additionally, he emphasizes the importance of more research and better recognition of conditions like PANDAS/PANS in the medical community to improve diagnosis and treatment. The episode touches on the evolving understanding of these diseases and the critical role of clinical research and education. The POND Brain Bank at Georgetown University https://neurology.georgetown.edu/patientcare/pond-brain-bank/ Clinicopathologic Characteristics of PANDAS in a Young Adult: A Case Report https://karger.com/dne/article/45/6/335/862829/Clinicopathologic-Characteristics-of-PANDAS-in-a 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 Follow us on: Facebook Instagram LinkedIn

    1 小时 17 分钟
  6. S2 E11: Physician-Scientist Herb Lachman, MD, Talks about Recent Genetic Observations in PANS: DNA Damage Response Genes

    2月23日

    S2 E11: Physician-Scientist Herb Lachman, MD, Talks about Recent Genetic Observations in PANS: DNA Damage Response Genes

    Dr Herb Lachman is a physician, behavioral geneticist, and professor at the Albert Einstein College of Medicine in New York City.  In his 44 years on the faculty, he has studied the molecular basis of schizophrenia, autism, and the broad category of neurodevelopmental disorders. More recently, a serendipitous inquiry about a major DNA Damage Response Gene, PPMD1, prompted Dr. Lachman to shift his focus to PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome). In the 11th episode of “Untangling PANDAS and PANS,” we discuss some basic information about genetics so that laypersons with an interest in this subject are able to assimilate his findings about DNA damage repair genes and their potentially significant role in neuropsychiatric conditions. These genes not only underscore the complexity of PANS and PANDAS but also point to the multifaceted interplay between genetics and the immune system at the intersection of the brain. Genes are surely Dr. Lachman’s muse. He is quick to acknowledge that his sample sizes are small and biased, but they are nonetheless generating hypotheses to study more fully with larger data sets. The simple question of why, given the ubiquity of Group A Strep, does only a small subset of patients develop PANDAS? Genetic mutations will very likely help to provide answers in the future. To learn more about Dr. Herb Lachman's recent genetics findings on PANS, please refer to these two articles:  https://karger.com/dne/article/doi/10.1159/000541908/914745/Ultrarare-Variants-in-DNA-Damage-Repair-Genes-in https://pubmed.ncbi.nlm.nih.gov/35773312/ 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 Follow us on: Facebook Instagram LinkedIn

    1 小时 14 分钟
  7. 1月26日

    S2 E10: Dr. Juliette Madan Explains the Importance of Epidemiological Research on PANDAS & PANS

    Juliette C. Madan, MD, MS wears many hats. Dr. Madan is an Associate Professor of Pediatrics, Psychiatry, Epidemiology, and Quantitative Biomedical Data Science at Geisel School of Medicine at Dartmouth. She is the Clinical Director of the Children’s Environmental Health and Disease Prevention Research Center within Geisel and Dartmouth Hitchcock Medical Center. She is widely recognized for her research in understanding the intestinal microbiome’s role in health and disease and in interventions such as nutritional, probiotic regimens, and fecal matter transplant.  My relationship with Dr. Madan grew out of her role as co-founder of the Psychiatry Immunology and Neurology Group (known as PING) which is now named the Neuroimmune Psychiatric Disorders (NIPD) Clinic, one of only a handful of clinics in the nation devoted to treating PANDAS and PANS in children and adults. That was founded in 2019.  Today, she and Dr. Richard Morse, a neurologist with whom she founded PING, are the co-chairs of The Alex Manfull Fund Scientific and Medical Advisory Board I could have talked to Dr Madan about a multitude of subjects but, for this interview I asked her to wear her Epidemiology hat.  (She promised to return to discuss other areas). Current estimates of the incidence of PANDAS/PANS varies widely from 1 in 46,000 to as high as 1 in 200.  The latter figure is bandied around but it is not based on research, epidemiological or otherwise.  Dr Madan discusses her own recent (2023) research with Dr. Ellen Wald, a highly respected pediatric infectious disease physician, and others on the prevalence of PANDAS and PANS.  Because there were many limitations in that study, she and Dr. Wald are about to conduct an (NIH-supported) epidemiological study to answer the prevalence question using a different methodology,   Dr Madan is a graduate of Brown University School of Medicine, after which she completed a fellowship program in neonatal-perinatal medicine at Tufts University and while at Tufts, completed a master's degree in clinical and translational research. When Dr. Madan is not in her clinic or her lab, look for her on the Connecticut River as she is a passionate rower. She also manages to find time with her ducks and chickens! NOTE: My conversation with Dr. Madan was recorded prior to the December 16, 2024 release of the preliminary clinical report on PANS by The American Academy of Pediatrics (AAP). 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 Follow us on: Facebook Instagram LinkedIn

    47 分钟
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Hello and welcome to Untangling PANDAS & PANS, a podcast about two relatively unknown medical disorders characterized by the sudden and dramatic onset of obsessions and compulsions, vocal or motor tics, or restricted eating behavior -- and a whole host of other symptoms -- following strep or other bacterial or viral infection. Sometimes overnight.   I have the privilege of interviewing some of the top researchers and clinicians in the rapidly growing field of Infection-Associated, Immune-Mediated Neuropsychiatric Disorders. That’s a mouthful of words that encompasses the strangely named disorders, PANDAS and PANS.My name is Dr. Susan Manfull. I am a social psychologist, the Executive Director of The Alex Manfull Fund, and the mother of Alex Manfull, who died at 26 years old due to PANDAS, a neuropsychiatric disorder my husband and I knew next to nothing about, certainly not that our daughter could die from it.PANDAS is an acronym for “Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus.” This disorder, first defined in 1998 at the National Institute of Mental Health, describes the acute and dramatic onset of obsessions and compulsions and/or motor or vocal tics as well as a whole host of neuropsychiatric symptoms in temporal association to a Group A streptococcal infection.  PANS, which stands for Pediatric Acute-onset Neuropsychiatric Syndrome, refers to a similar symptom presentation -- with obsessions and compulsions or restricted eating being the cardinal symptoms -- due to a broader category of triggers (typically bacterial or  viral infections). Both are thought to stem from a dysregulated immune system, probably leading to an over-production of autoantibodies and concomitant excess brain inflammation, particularly in the basal ganglia. Symptoms vary from person to person and range in  severity from mild to severe, and generally have a relapsing and remitting course. With early recognition and correct treatment, these disorders can be successfully treated. Today, it is no longer viewed as a diagnosis limited to the pediatric population.Please stay tuned after each episode to listen to a one-minute public service announcement about PANDAS & PANS and The Alex Manfull Fund.  To learn more, please visit our website: TheAlexManfullFund.org.This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition.

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