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PANDAS / PANS
During the 99th session of the Illinois General Assembly, a bill became law that created an advisory committee on 2 conditions called PANDAS and PANS (P.A. 99-0320). The first meeting of this newly constituted Advisory Council was held in March of 2016. PANDAS is an acronym for a condition called Pediatric Autoimmune Neuropsychiatric Disorder Association with Streptococcal Infections. PANS is an acronym for Pediatric Acute-onset Neuropsychiatric Syndrome. PANDAS and PANS are autoimmune, encephalopathic disorders characterized by changes in neurologic function, mood, and behavior. The conditions are relatively rare and were identified in the 1980’s when investigators at the National Institutes of Health (NIH) identified a subset of children with obsessive-compulsive disorder who had a sudden onset of their psychiatric symptoms, typically following an infection of some kind. Other states have recently developed advisory and work groups addressing these conditions as well in order to raise awareness and provide input and direction to their State’s on raising awareness among parents, clinicians, schools and others about the existence of these conditions and recommendations related to what can be done to identify ways to promote access to care and treatment.
IDPH will post information related to our own State’s Advisory Council activities including the statutorily mandated annual reports (January 1 of each year), agendas and minutes of meetings, resources and links, and any other pertinent information.
For copies of the PANDAS/PANS Advisory Council agendas and minutes please click here.
Resources:
The National Institute of Mental Health (NIMH) has basic information available on PANDAS and PANS disorders, along with specific diagnostic and treatment information.
The NIMH can offer support to physicians and families at ocdresearch@mail.nih.gov.
The Foundation for Children with Neuroimmune Disorders is offering a series of Continuing Medical Education (CME) webinars regarding PANDAS/PANS throughout 2019 on January 29, March 12, May 15 and August 27. For more information, please visit the Foundation’s website.
The PANDAS Physicians Network (“PPN”) is a 501(c)(3) organization whose function and mission are to help medical professionals better understand the PANDAS and PANS diseases. These efforts are accomplished through publication and sharing of information and networking amongst physicians. PPN has an advisory body with representation from a variety of specialties and academic medical institutions in the United States. The advisory group have all worked with, treated, or studied the patients or aspects of the disorder.
PANDAS Network is a 501 (c) (3) organization that is dedicated to improving the diagnosis and treatment of children with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). This organization was formed by parent of children who had been afflicted with PANDAS/PANS to encourage research, raise public awareness, provide family support, and gather data and resources to better inform parents and the medical community about PANDAS and PANS.
PAS was established in 2011 to offer support groups to families and create public awareness of Pediatric Autoimmune Neuropsychiatric Disorders specifically within Illinois. This local group has grown exponentially since its inception and has recently expanded its role as a national 501(c)(3) to include advocacy, grant giving, and collaboration with other PANDAS/PANS organizations and medical institutions.
Charlie's Law (P.A. 100-0024) passed in the summer of 2017. Charlie's Law requires insurance coverage for the treatment of PANDAS/PANS, including, but not limited to, intravenous immunoglobulin (IVIG).
Academic Consensus Statements and Presentations
- Clinical Evaluation of Youth with Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS):
Recommendations from the 2013 PANS Consensus Conference - This is a consensus statement produced by diverse group of clinicians and researchers that proposes recommendations for the diagnostic evaluation of youth presenting with pediatric acute-onset neuropsychiatric syndrome (PANS). - Pediatric Grand Rounds – Dr. Susan Swedo - This is a University of Arizona Grand Rounds Presentation by Dr. Susan Swedo, presenting on PANDAS, PANS and other acute-onset neuropsychiatric syndromes.
- Pediatric Grand Rounds – Dr. Jenny Frankovich - This is a University of Arizona Grand Rounds Presentation by Dr. Jenny Frankovich on Pediatric Neurological Autoimmune Diseases like pediatric acute-onset neuropsychiatric syndrome (PANS).
- National Institutes of Health Clinical Center Grand Rounds - Dr. Susan Swedo - An Overview of PANDAS, PANS and other Acute-onset Neuropsychiatric Disorders and HLA Association and Evidence of the Role of Inflammation in PANDAS/PANS.
- Overview of Treatment of Pediatric Acute-Onset Neuropsychiatric Syndrome - Published by Dr. Susan Swedo, Dr. Jenny Frankovich, and Dr. Tanya K. Murphy in the Journal of Child and Adolescent Pharmacology. Addresses the clinical management of PANS.
- Presentation and Management of Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS) - Sponsored by the Stanford University School of Medicine and presented by the Departments of Pediatrics and Psychiatry and Behavioral Health at the Stanford University School of Medicine.
Resources
- PANDAS/PANS Advisory Council Agendas and Minutes
- Overview of Treatment of PANS - An Introduction
- Psychiatric and Behavioral Interventions
- Use of Immunomodulatory Therapies
- Treatment and Prevention of Infections
- Physician Diagnostics Treatment Flowchart
- 2018 PANDAS/PANS Advisory Council Standards of Care Summit - Moving Past Controversy to Provide Clinical Care
- 2018 PANDAS/PANS Advisory Council Standards of Care Summit - Supporting the Child with PANDAS/PANS in School