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

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

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.

Episodes

May 26, 2024 13 mins

In Part 3, the discussion with Dr. Shannon Delaney continues on her soon-to-be-released study in Frontiers in Psychiatry Journal about the prevalence of Bartonella in patients diagnosed with Bartonella.

Recorded May 13, 2024

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 Ki...

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In Part 2, the discussion with Dr. Shannon Delaney continues with a focus on the diagnosis and treatment of Lyme and other tick-borne diseases.

Recorded May 13, 2024

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

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Dr. Shannon Delaney, a psychiatrist with expertise in PANDAS/PANS, Lyme, and other vector-borne diseases, talks with Susan Manfull about how these complex disorders present in children and adults. Much of what she came to learn about Lyme came from her work with Dr. Brian Fallon at Columbia University. 

After her residency at Harvard Longwood Psychiatry Residency Program,  she moved to  New York-Presbyterian/Weill Cornell ...

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In episode two, Susan Manfull interviews Dr. Kyle Williams, Director of the Pediatric Neuropsychiatry and Immunology Program at Massachusetts General Hospital, and Andrew about the potential link between strep, psoriasis, psoriatic arthritis, and obsessive-compulsive disorder (OCD).

Andrew shares his personal experience of how his psoriasis and OCD symptoms improved after being treated with the biologic medication Cosenty...

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It seemed our conversation from Episode 2 was left dangling so we continued talking. If you would like to hear a wee bit more, listen to this bonus content which captures most of that conversation, mostly musings about navigating the medical system and whether the division between psychiatry and neurology is artificial (another dangling conversation to be continued in another episode).

Disclaimer: The views and opinions expressed in...

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Lauren Breithaupt, PhD, Assistant Professor of Psychiatry, based in the Eating Disorders Clinical and Research Program at Massachusetts General Hospital, will discuss her cutting-edge research about the immunological basis of eating disorders and PANDAS and PANS.

After briefly describing her work on eating disorders, she talks about her new research on PANDAS and PANS. Entitled “Using a Machine Learning Approach to Identif...

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In this bonus episode, I will be talking about our second annual  PANS/PANDAS Advocacy Day on Capitol Hill, a joint event planned by the National Alliance of PANS/PANDAS Action (NAPPA) and The Alex Manfull Fund (TAMF) to be held on Friday, April 12th in Washington, DC.  My guests -- Amanda Peel Crowley, co-founder of NAPPA, and Paul J. Murphy, Treasurer of The Alex Manfull Fund -- have all the details!
LINK to register:  https...

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