Understanding PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections) requires a deep dive into the ongoing research and the experiences of experts in the field. In this blog post, we’ll share insights gleaned from interviews with prominent researchers and clinicians who have dedicated their careers to unraveling the mysteries of PANS and PANDAS.
1. Dr. Susan Swedo:
a. Position: Chief, Pediatrics & Developmental Neuroscience Branch at the NIMH
b. Source: https://www.youtube.com/watch?v=eQajnaJqg7o
In pediatric settings, PANS/PANDAS often initially manifests through symptoms like urinary frequency or abrupt school refusal due to separation anxiety, rather than obvious OCD signs. Upon further examination, pediatricians may uncover underlying obsessions, compulsions, behavioral regression, and other cognitive issues suggesting PANS/PANDAS. Initial treatment generally involves antibiotics, with many patients showing significant improvement within a week to 10 days. For more severe or non-responsive cases, advancing to steroid or Intravenous Immunoglobulin (IVIG) treatment is advised, and consulting with specialized PANS/PANDAS centers is recommended for tailored guidance. Dr. Susan Swedo stresses the importance of investigating the root cause of sudden behavioral disorders to ensure accurate diagnosis and effective treatment.
2 .Dr. Jennifer Frankovich:
a. Position: a clinical professor at Stanford University, specializes in systemic inflammatory and autoimmune diseases that co-occur with psychiatric symptoms.
b. Source: https://www.youtube.com/watch?v=IcTHjQjS_wA
Dr. Frankovich’s interest in PANS/PANDAS stems from her engagement in autoimmune encephalitis cases, which led to the establishment of a specialized clinic for autoimmune brain diseases at Stanford. The conversation highlighted the diagnostic complexities surrounding PANS/PANDAS due to its varied presentations and onset speeds, emphasizing the need for a better understanding of this condition, which might be influenced by infections or the blood-brain barrier integrity. She also mentioned the discovery of three immunogenetic markers associated with PANS, hinting at the multifactorial nature of autoimmune diseases, and raised the potential role of the microbiome in these conditions. The discussion underscored the collaborative research efforts and data collection aimed at improving the understanding and treatment approaches for PANS/PANDAS, with her team committed to distributing collected samples to scientists for studying immune pathways and devising better treatment strategies.
3. Dr. Richard Frye
a. Position: Pediatric Neurologist who has authored over 150 peer-reviewed publications and book chapters, and serves on several editorial boards.
b. Source: https://www.youtube.com/watch?v=J25FL8aN7zE
Dr. Richard Frye discusses the complex interplay between PANS (Pediatric Acute-onset Neuropsychiatric Syndrome), Autism, and physiological changes around puberty, suggesting a potential hormonal and other physiological influences on symptom exacerbation. He emphasizes the importance of a thorough clinical evaluation for children experiencing regression, which includes a lumbar puncture and MRI to explore both neuro-immune and neuro-metabolic problems. The discussion also touches on the use of the Cunningham Panel to understand the impact of autoantibodies on cellular function, which could provide insight into the treatment efficacy of IVIG (Intravenous Immunoglobulin Therapy) in children with Autism Spectrum Disorders. Additionally, the bidirectional relationship between mitochondrial dysfunction and autoimmune responses is explored, emphasizing the need to support metabolism as a preliminary step in treatment before moving on to immune modulating therapies. Dr. Frye also mentions the challenges in diagnosing and treating Mast Cell Activation Syndrome due to limited standard testing, suggesting a potential area for clinical exploration.
4. Dr. Madeleine Cunningham
a. Position: Dr. Madeleine Cunningham serves as the George Lynn Cross Research Professor, Presbyterian Health Foundation Presidential Professor in Microbiology and Immunology, and Director of the Immunology Training Program at the University of Oklahoma Health Sciences Center Biomedical Research Center in Oklahoma City, OK, while also leading a laboratory focused on molecular mimicry, autoimmunity, and infection in inflammatory heart diseases, and holding the position of Co-Founder and Chief Scientific Officer at Moleculera Labs, where her extensive research continues to contribute to the field of autoimmune and infectious disease
b. Source: https://www.youtube.com/watch?v=-GmF_EM4c9w
Dr. Cunningham discussed the significance of elevated auto antibodies following infections like streptococcal pharyngitis, distinguishing between transient antibodies in healthy individuals and persistent ones in autoimmune diseases such as Sydenham chorea. She highlighted the crucial role of the blood-brain barrier, which, when compromised due to infections or trauma, could manifest as psychiatric symptoms, suggesting that environmental or genetic factors might also influence susceptibility. The discussion on CAM Kinase 2 shed light on how abnormal activation in response to antibodies binding to neuronal cell receptors could be associated with certain diseases, and mentioned the potential link between mutations in the CAM Kinase gene and autism. The differentiation between PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections) and Autism Spectrum Disorders (ASD) was emphasized to avoid misdiagnosis due to overlapping symptoms. Lastly, the need for a broader understanding and acceptance of the Cunningham Panel as a diagnostic tool within the medical community was stressed, urging professionals to delve into published studies to better grasp the spectrum of autoimmune encephalitis and its varying manifestations.
5. Miroslav Kovacevic MD:
a. Position: Board Certified Pediatrician who was one of the pioneers in treating PANS & PANDAS
b. Source: https://www.youtube.com/watch?v=RCobb6IonmI
Dr. Miroslav Kovacevic’s presentation on PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) highlights the clinical diversity of this condition, including symptoms like sudden food refusal, long-term anorexia, and severe anxiety. He emphasizes the importance of considering PANDAS in cases of sudden-onset neuropsychiatric symptoms, particularly in children and adolescents, and outlines a treatment approach involving adenoid and tonsil removal, intravenous immunoglobulin (IVIG) therapy, and antibiotic prophylaxis. This approach has shown promise in managing moderate to severe PANDAS cases. Early recognition and appropriate treatment are crucial for positive outcomes in affected patients.
6. Eric Storch PhD: researcher in OCD
Dr. Eric Storch emphasizes the multifaceted origins of Obsessive Compulsive Disorder (OCD), attributing it to neurological, genetic, behavioral, cognitive, and environmental factors, with a particular focus on neurotransmitter imbalances. He accentuates the importance of early identification of OCD symptoms in children and provides guidance to parents on recognizing signs of this condition and communicating effectively with pediatricians. Dr. Storch advocates for a proactive approach in seeking both behavioral and pharmacological interventions, endorsing Exposure and Response Prevention therapy as a notable behavioral treatment. He also encourages engagement with ongoing research to better comprehend OCD, enabling well-informed advocacy for appropriate care and treatment for the child. Lastly, the influence of stressful life events and family history on the onset or exacerbation of OCD symptoms underlines the necessity for a holistic approach in both understanding and managing this disorder.
7. Shannon Delaney, MD
a. Position: Neuropsychiatrist, Assistant Professor of Psychiatry; Director, Child and Adolescent Evaluation, Lyme & Tick-borne Disease Research Center, Columbia University Medical Center
b. Source: https://neuroimmune.org/dr-shannon-delaney-interview/
Dr. Delaney discussed ongoing research at Columbia, focusing on understanding persistent symptoms related to Lyme disease through trials such as a disulfiram trial and a Vagus Nerve Stimulation study targeting theorized inflammation. She underscored the lack of diagnostic tests to identify active infection, further contributing to the controversy surrounding chronic Lyme. The inadequacy and variability in current testing methods for Lyme disease were highlighted, emphasizing the necessity for comprehensive testing and multiple lab analyses to derive a clearer diagnostic picture. In the realm of Neuro-Lyme, it was noted that over 75% of patients at their clinic presented with significant neurological and psychiatric symptoms, with lumbar puncture tests often yielding low diagnostic results, hence preferring clinical judgment for treatment recommendations. She described a more smoldering course in Lyme-triggered PANS patients compared to the abrupt onset in PANDAS patients triggered by other pathogens. The discussion also touched on a psychosis biomarker study showing a correlation between high IL-6 and low vitamin D levels in the psychosis group. Dr. Delaney shared her experience of seeing remarkable improvements in patients with the right treatment course, often involving antibiotics and IVIG, and advised patients and families to trust their intuition and seek multiple opinions from experienced clinicians in navigating through Lyme disease or PANS/PANDAS conditions.
The wealth of knowledge shared by these experts provides a rich tapestry of understanding, shedding light on the intricate facets of PANS and PANDAS. Through their rigorous research and clinical experiences, we edge closer to unraveling the complexities of these neuropsychiatric disorders, paving the way for improved diagnostic methodologies and treatment protocols.