PANDAS: Diagnosis and Treatment

PANDAS can be challenging to diagnose as it mimics various mental illnesses and behavioral disorders, including OCD, Tourette’s syndrome, ADHD and ASD.

PANDAS: Diagnosis and Treatment
PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infections) is diagnosed clinically based upon a patient’s symptoms, medical history, and laboratory findings. In 2004, diagnostic guidelines for PANDAS syndrome were updated and published by Dr. Susan Swedo and a team of researchers from the National Institute of Mental Health (NIMH).
This disorder is characterized by an abrupt onset of obsessions and compulsions (OCD-like behaviors) and/or tics, in temporal association with a Group A streptococcal infection. And, although the diagnostic criteria only requires the presence of OCD or tics, “co-morbid neuropsychiatric symptoms are universally present” in these patients. 1

A study by Swedo et al. found, “Separation anxiety was the most common co-morbid symptom in both the NIMH and community samples [of PANDAS patients] (92% and 86%, respectively), followed closely by school issues (81% and 75%), and sleep problems (71% for both).” 2

It can be challenging to recognize PANDAS as many of the co-morbid symptoms overlap with other neuropsychiatric illnesses. As a result, children with PANDAS syndrome are often misdiagnosed with a primary psychiatric illness or behavioral disorder, such as OCD, ADHD, oppositional defiant disorder, Tourette’s syndrome, autism spectrum disorder (ASD), and bipolar disorder.

Diagnosing PANDAS can be challenging as symptoms follow a relapsing-remitting course and mimic many psychiatric disorders.

PANDAS is a clinical diagnosis made by a medical professional. The Cunningham Panel™ of tests can provide laboratory evidence of an underlying autoimmune dysfunction, and assist clinicians in their diagnosis and in determining an appropriate treatment regimen.

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PANDAS: Diagnostic Criteria

There are 5 diagnostic criteria for PANDAS, as developed by the PANDAS Physicians Network consortium 1:
  1. Presence of OCD and/or tics (particularly multiple, complex, or unusual tics)
  2. Symptoms of the disorder first become evident between 3 years of age and puberty

    “Post-pubertal onset of PANDAS is possible and seen by NIMH and clinicians in the field.” 1

  3. Acute onset and episodic (relapsing-remitting) course

    To meet the diagnostic criteria, symptoms must appear suddenly, seemingly overnight. However, there have been cases reported where symptom onset is more gradual.

  4. Association with Group A Streptococcal (GAS) infection

    In PANDAS syndrome, “GAS infections often are found without apparent pharyngitis (i.e., the child did not complain of a sore throat).” 1

    “40% of children with documented GAS infections do not show a titer rise, creating a potential false negative.” 1

  5. Association with Neurological Abnormalities

    “The diagnostic criteria for PANDAS require only the presence of OCD or tics, but co-morbid neuropsychiatric symptoms are universally present.” 1

    “… it is not uncommon for the type of co-morbid symptoms to change multiple times during the course of the illness.” 1

PANDAS: Treatment Guidelines

In 2017, a consortium of clinicians and researchers published PANS and PANDAS treatment guidelines in the Journal of Child and Adolescent Psychopharmacology. 3,4,5 The guidelines focused on three treatment areas: psychiatric and behavioral interventions, use of immunomodulatory therapies, and treatment and prevention of infections.

Although patients present with multiple neuropsychiatric symptoms, PANDAS is an autoimmune disorder, which may appear to be a primary psychiatric illness. The neuropsychiatric presentation can be confusing to parents and clinicians which may result in a missed or delayed diagnosis.

While psychotropic medications may be helpful in managing symptoms, often times patients with PANS and PANDAS do not respond to, or their symptoms are worsened with these medications.

Prompt treatment of each flare and treatment of the earliest flares improve outcomes. If flares are left untreated, the risks of ongoing neuropsychiatric symptoms and chronic inflammatory conditions are likely to increase. 6

It is important to identify and diagnose PANDAS early, as proper treatment can lead to a remarkable resolution or substantial reduction in symptoms.

PANDAS treatment involves identifying and eradicating any infections and addressing the underlying autoimmune dysfunction and inflammatory response with immunomodulatory therapies. Treatments may include antibiotics, steroids, anti-inflammatory drugs (such as ibuprofen or naproxen), CBT/ERP, psychotropics, intravenous immunoglobulin (IVIG), and plasmapheresis. 7

“Most patients with PANS/PANDAS remit with appropriate treatment. For a few children, the clinical course may evolve to become a chronic autoimmune condition.” 7

  1. PANDAS Physicians Network (PPN). PANDAS Diagnostic Guidelines. https://www.pandasppn.org/pandas/
  2. Swedo SE, Seidlitz J, Kovacevic M, et al. Clinical presentation of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections in research and community settings. J Child Adolesc Psychopharmacol. 2015;25(1):26-30. doi:10.1089/cap.2014.0073 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4340334/
  3. Margo Thienemann, Tanya Murphy, James Leckman, Richard Shaw, Kyle Williams, Cynthia Kapphahn, Jennifer Frankovich, Daniel Geller, Gail Bernstein, Kiki Chang, Josephine Elia, and Susan Swedo. Journal of Child and Adolescent Psychopharmacology.Sep 2017.566-573.http://doi.org/10.1089/cap.2016.0145 https://www.liebertpub.com/doi/full/10.1089/cap.2016.0145
  4. Jennifer Frankovich, Susan Swedo, Tanya Murphy, Russell C. Dale, Dritan Agalliu, Kyle Williams, Michael Daines, Mady Hornig, Harry Chugani, Terence Sanger, Eyal Muscal, Mark Pasternack, Michael Cooperstock, Hayley Gans, Yujuan Zhang, Madeleine Cunningham, Gail Bernstein, Reuven Bromberg, Theresa Willett, Kayla Brown, Bahare Farhadian, Kiki Chang, Daniel Geller, Joseph Hernandez, Janell Sherr, Richard Shaw, Elizabeth Latimer, James Leckman, Margo Thienemann, and PANS/PANDAS Consortium.Journal of Child and Adolescent Psychopharmacology.Sep 2017.574-593.http://doi.org/10.1089/cap.2016.0148 https://www.liebertpub.com/doi/full/10.1089/cap.2016.0148
  5. Michael S. Cooperstock, Susan E. Swedo, Mark S. Pasternack, Tanya K. Murphy, and for the PANS/PANDAS Consortium.Journal of Child and Adolescent Psychopharmacology.Sep 2017.594-606.http://doi.org/10.1089/cap.2016.0151 https://www.liebertpub.com/doi/full/10.1089/cap.2016.0151
  6. Margo Thienemann, MD, Jennifer Frankovich, MD, MS. Sudden Onset of Tics, Tantrums, Hyperactivity, and Emotional Lability: Update on PANS and PANDAS. Psychiatric Times. April 25, 2017. https://www.psychiatrictimes.com/view/sudden-onset-tics-tantrums-hyperactivity-and-emotional-lability-update-pans-and-pandas
  7. PANDAS Physicians Network (PPN). Treating PANS/PANDAS. https://www.pandasppn.org/treatment/
PANDAS patients often have multiple neuropsychiatric symptoms that may change over the course of illness.

PANDAS patients often have multiple neuropsychiatric symptoms that may change over the course of illness.

Read Physician Testimonials about the Cunningham Panel
Can you develop PANDAS from an infection?
Infections may result in developing PANDAS

Learn More About PANS & Pandas and The Cunningham Panel™

PANDAS: Diagnostic Guidelines

PANDAS Diagnostic Guidelines

PANDAS: Treatment Guidelines

PANDAS Treatment Guidelines

Video Presentation: Overview for diagnosing and treating PANS/PANDAS by Susan Swedo, MD

Video Presentation: Overview for diagnosing and treating PANS/PANDAS – Susan Swedo, MD

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    The Cunningham Panel™ – Antibody testing that helps determine whether an autoimmune response may be triggering neurologic and/or psychiatric symptoms.

B. Robert Mozayeni, MD

Medical and Clinical Advisor

B. Robert Mozayeni MD

Dr. B. Robert Mozayeni was trained in Internal Medicine and Rheumatology at Yale and at NIH. He has had pre- and post-doctoral Fellowships in Molecular Biophysics and Biochemistry at Yale, and also at NIH where he was a Howard Hughes Research Scholar at LMB/DCBD/NCI and later, Senior Staff Fellow at LMMB/NHLBI/NIH. Editorial board of Infectious Diseases – Surveillance, Prevention and Treatment. Past President of the International Lyme and Associated Diseases Society (ILADS).

He is an expert in Translational Medicine, the science and art of advancing medical science safely and efficiently. He is a Fellow of the non-profit Think Lead Innovate Foundation and is a co-founder of the Foundation for the Study of Inflammatory Diseases. He is a Founder of the Foundation for the Study of Inflammatory Diseases to crowd-source medical solutions for complex conditions using existing knowledge, diagnostic methods, and therapies to meet patient needs immediately. He is the Chief Medical Officer of Galaxy Diagnostics, LLC. He is a Board member of the Human-Kind Alliance. Dr. Mozayeni has held admitting privileges (since 1994) on the clinical staff of Suburban Hospital, a member of Johns Hopkins Medicine and an affiliate of the National Institutes of Health Clinical Center.

Safedin Sajo Beqaj, PhD, HCLD, CC (ABB)

Moleculera Labs, Clinical Laboratory Advisor
Medical Database, Inc., President and CEO

Sajo Baqaj, PhD

Dr. Sajo Beqaj is board certified in molecular pathology and genetics and licensed as a Bioanalyst and High Complexity Laboratory Director. He has been practicing as a laboratory director since 2005.

Dr. Beqaj served as a technical director and was part of the initial management team for several well-known laboratories in the clinical lab industry including PathGroup, Nashville, TN; DCL Medical Laboratories, Indianapolis, IN, and Pathology, Inc, Torrance, CA. He is currently serving as off-side CLIA laboratory director for BioCorp Clinical Laboratory, Whittier, CA and Health360 Labs, Garden Grove, CA.

Dr. Beqaj received his Ph.D. in Pathology from Wayne State University Medical School, Detroit, Michigan. He performed his post-doctoral fellowship at Abbott Laboratories from 2001-2003 and with Children’s Hospital and Northwestern University from 2003-2005.

Dr. Beqaj has taught in several academic institutions and has published numerous medical textbook chapters and journal articles. He has served as a principal investigator in clinical trials for several well-known pharmaceutical and diagnostic companies such as Roche HPV Athena, Merck HPV vaccine, BD vaginitis panel, Roche (Vantana) CINtec® Histology clinical trials, and has presented various scientific clinical abstracts and presentations.

He is a member of several medical and scientific associations including the Association of Molecular Pathology, American Association of Clinical Chemistry and the Pan Am Society for Clinical Virology. He has served on a number of clinical laboratory regulatory and scientific committees, and has assisted several laboratories and physicians as a Clinical Laboratory Consultant.

Rodney Cotton, MBA

Moleculera Labs Board Member

Rodney Cotton, MBA

Rodney Cotton, MBA is an entrepreneurial thought leader in the pharmaceutical/biotech industry who is known for his holistic perspective, bias for action in the face of challenges, and commitment to agile processes.

Rod is an independent director for Orchard Software, a private equity-backed health technology company owned by Francisco Partners; an advisory board member to Flo2 Ventures, a venture capital-backed healthcare and health equity accelerator; and a member of the board of directors and three board committees (Audit, Compliance & Finance; Governance & Equity; and Quality of Care) for Community Health Network.

He built a successful career at Roche spanning more than two decades and culminating in the role of SVP, Head of Strategy & Transformation, and Chief of Staff to the CEO for Roche Diagnostics, the North American headquarters of the world’s largest ($17B) diagnostics company.

While at Roche, Rod led key enterprise initiatives, such as milestone corporate communications, health equity coalitions, the US/Roche Group audit, and global/US acquisition integrations. With 40+ years of experience, he drove the financial turnaround and cultural transformation of four global healthcare companies, led teams of up to 280 total reports, managed P&L of more than $1 billion, and served as a key member of the senior leadership team executing the most significant restructuring of the company in two decades.

In the face of the COVID-19 pandemic, Rod and his team at Roche accelerated six ground breaking products in 11 months, including the first launch of the market’s most accurate and in demand molecular diagnostic test. He also solved extraordinary challenges of product scarcity, supply chain, product allocation, and logistics to achieve accelerated global sourcing and self manufacturing in line with testing guidelines.

A frequent public speaker on health equity and other topics, Rod was named one of the Most Influential Black Executives in Corporate America by Savoy Magazine and one of the Top Blacks in Healthcare by BlackDoctor.org. He also received The Sagamore of the Wabash Award, one of the highest Indiana State honors, bestowed by Indiana Governor Eric J. Holcomb.

Rod holds an M.B.A. from California State University, Dominguez Hills, an M.S. in Strategic Management from the University of Southern California, and a B.A. in Biological Sciences & Technology from the University of California at Santa Barbara.