There are invaluable resources to help clinicians and providers learn how to recognize PANS symptoms, do a workup to inform a possible diagnosis and create a treatment plan. ASPIRE has assembled the toolkit below to provide a place to start, but there are many resources throughout the website, and we are always adding more. So, check back often.

PANS Diagnostic Criteria

PANS Consensus Statement on Diagnosing PANS and PANDAS –Clinical Evaluation of Youth with Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS): Recommendations from the 2013 PANS Consensus Conference. Chang, MD et al (JCAP, Vol 25, No 1, 2015 Mary Ann Liebert, Inc.)

  • Abrupt, acute onset of obsessive-compulsive disorder or severely restricted food intake
  • Concurrent presence of additional behavioral or neurological symptoms with similarly acute onset and severity from at least 2 of the following categories:
    • Anxiety
    • Emotional Lability and/or Depression
    • Irritability, Aggression, and/or Severe Oppositional Behaviors
    • Behavioral (Developmental) Regression
    • Sudden Deterioration in School Performance
    • Motor or Sensory Abnormalities
    • Somatic Signs and Symptoms, including Sleep Disturbances, Enuresis, or Urinary Frequency
  • Symptoms are not better explained by a known neurologic or medical disorder
  • Age requirement – None

PANS PANDAS Symptoms        PANS Consensus Statement

 

The Diagnostic Process

  • Step 1: Review Symptoms, Medical History, Physical Exam
  • Step 2: Draw Labs to Understand Infections and Immune System Function
  • Step 3: Perform Imaging or Other Testing to Rule Out Other Conditions

More on the PANS Diagnostic Process

The PANDAS Physicians Network (PPN) flowcharts for diagnosis and treatment will help clinicians evaluate their patients and determine the best course of treatment. Guidelines and workflows were approved by practitioners of the PANDAS Physicians Network Scientific Advisory Board. More detailed resources are available at www.pandasppn.org. Diagnosing and treating should be done by a licensed healthcare provider.

Primary care providers play important, ongoing roles in the diagnosis, treatment, and recovery of children with PANS/PANDAS. Children with a moderate or severe/life-threatening onset or a complex presentation may require treatment by an experienced multi-disciplinary team of specialists or a PANS/PANDAS specialist. Additional resources can be found at

PANDAS PPN Seeing Your First Patient

PANDAS PPN Diagnostic Flowchart

PANS PANDAS Diagnose

New PANDAS Physicians Network Diagnostic Flowchart The diagnostic flowchart and treatment guidelines include a detailed process provided for determining the appropriate diagnosis and symptom severity-based treatment protocols for mild, moderate, and severe/extreme cases.

PANS PANDAS Treatment Guidelines

PANS treatment utilizes three complementary modes of interventions to treat the patient completely. Three-pronged treatment protocols are dependent on disease trajectory, symptoms, and severity as well as lab work and patient history.

Pans treatment triangle

 

  1. Provide Symptomatic Relief
  2. Treat Postinfectious Autoimmunity and/or Neuroinflammation
  3. Treat Source of Infection

PANS Treatment Information

JCAP PANS Treatment Guidelines

 

The PANDAS Physicians Network (PPN) flowcharts for diagnosis and treatment will help clinicians evaluate their patients and determine the best course of treatment. The diagnostic flowchart and treatment guidelines include a detailed process provided for determining the appropriate diagnosis and symptom severity-based treatment protocols for mild, moderate, and severe/extreme cases.

Download PPN Treatment Flowchart

PANDAS PPN Treatment Chart in Detail

PANS PANDAS Diagnosis and Treatment Flowchart 2020 Mild Severity PANS PANDAS Diagnosis and Treatment Flowchart 2020 Medium Severity PANS PANDAS Diagnosis and Treatment Flowchart 2020 Severe Severity

10 THINGS You Should Know

About PANS PANDAS

  1. Strep throat is NOT the only infectious trigger. Although group A streptococcal (GAS) infections are associated with PANDAS, PANS is a broad-spectrum syndrome that can result from a variety of disease mechanisms and multiple etiologies.
  2. Acute onset can be preceded by milder episodes. Mild cases have been documented, and symptoms might look like behavioral problems, isolated tics, and sensory issues, among other issues that require awareness on the part of the parent and provider. These children should be clinically evaluated for PANS/PANDAS.
  3. Tics are not always present. While tics were part of the original PANDAS diagnostic criteria, they are not required for a PANS diagnosis.
  4. OCD symptoms vary. While the mean age of OCD in children is between the ages of 9 and 10, in children with PANS/PANDAS it can start much earlier. OCD presentation is acute and disruptive to a child’s normal functioning.
  5. Restrictive eating can be a primary symptom. Some children with PANS/PANDAS present with Avoidant Restrictive Food Intake Disorder without OCD or tics. A child with severe food restriction resulting in dramatic weight loss or who refuses fluid intake should be examined for PANS/PANDAS.
  6. Children with PANS/PANDAS may experience recurrence of episodes.  Some children experience remission of symptoms after treatment with no recurrence, while a portion experience subsequent exacerbation (relapse) incited by a variety of triggers.
  1. Prevalence is unknown due to poor diagnosis. PANS/PANDAS affects as many as 1 in 200 children each year according to the PANS/PANDAS consortium.
  2. Scientific studies strongly support PANS/PANDAS diagnosis. Diagnostic guidelines published by the Journal of Child and Adolescent Psychopharmacology (July 2017) and a recent nationwide study in the Netherlands designed to test PANDAS hypothesis demonstrated that individuals with a positive streptococcal test have an increased risk of neuropsychiatric disorders. The study also demonstrated an increased risk with non-streptococcal throat infections.
  3. Early diagnosis and treatment lead to improved outcomes. According to Dr. Sue Swedo, “preliminary data suggest that with appropriate treatment early in the course of illness, and effective use of antibiotic prophylaxis, we may be able to prevent up to 25%-30% of childhood mental illnesses.”
  4. Pediatricians CAN diagnose and treat PANS/PANDAS. The 2017 JCAP Treatment Guidelines issued by the PANS Physician Consortium are designed to provide practical clinical guidelines for the management and treatment of children diagnosed with PANS/PANDAS.

PANS/PANDAS Symptoms Tracking Tools

PANS is a clinical condition identified by an abrupt onset of a specific cluster of symptoms as a result of a variety of etiologies and disease mechanisms. Therefore, tracking symptoms, onset, severity, and duration is a critical part of making a clinical diagnosis and forming treatment plans. There are two useful PANS Symptom Rating Scale tools.

Symptom Tracking Tools

PANS-Rating-Scales-Murphy-Bernstein

Developed by Tanya Murphy, MD and Gail Bernstein, MD. Source: PANS/PANDAS: CLINICAL & RESEARCH UPDATE, Gail A. Bernstein, M.D., 12/9/16, University of Minnesota

ASPIRE PANS PANDAS Resources for Providers

ASPIRE PANS PANDAS clinician toolkitPANS PANDAS Clinician Toolkit

There are invaluable resources to help clinicians learn how to recognize PANS PANDAS symptoms, do a workup to inform a possible diagnosis, and create a treatment plan. ASPIRE has assembled this one-page Clinician Toolkit but there are many resources throughout the website, and we are always adding more. So, check the website often.

Clinician Toolkit

 

 

 

PANS PANDAS ASPIRE Provider Information Diagnosis and TreatmentDiagnosis & Treatment of PANS PANDAS – Provider Packet

Click the button below to download the twelve-page information packet Provider Information on PANS PANDAS including Symptoms, Diagnosis, and Treatment.

Overview of PANS PANDAS Information Packet

 

 

 

PANS PANDAS Overview of Symptoms, Diagnosis, Treatment

Click the button below to download the eight-page information packet Overview of PANS PANDAS including Symptoms, Diagnosis and Treatment.

Register with ASPIRE to download this information packet.

Download Overview of PANS PANDAS Packet

 

 

ASPIRE School Nurse Packet cover pictureSchool Nurse Role & PANS/PANDAS

School Nurses play an integral role in the health of students. They support students and student health every day of the year. Children with PANS/PANDAS have complex physical and mental health conditions that benefit from the support of a School Nurse.

Register with ASPIRE to download the PANS PANDAS School Nurse Overview information packet and share this page.

ASPIRE School Nurse Information Packet

Nurses’ Role in PANS/PANDAS

PANs PANDAS ASPIRE Nurse

Nurses are an integral part of the PANS PANDAS team. Nurses are often the first point of contact during an office visit. It is crucial for nurses not only to recognize PANS/PANDAS symptoms but also to understand how assessments are done and the basics of the treatment guidelines.

 

PANS PANDAS Nurse Tools

Occupational Therapy for PANS/PANDAS

During flares, it’s often difficult for those with PANS PANDAS to relearn skills impacted by the flare. The Occupational Therapist adapts or provides accommodations for activities that are more difficult. Once the flare begins to subside, the therapist is then able to support the child to relearn any skills they may have lost during the flare. This might include handwriting therapy, feeding therapy, self-regulation training, etc.

Occupational Therapy

Behavioral Health for PANS PANDAS

PANS PANDAS Mental Health Resources ASPIRE 

PANS/PANDAS (Pediatric Acute-Onset Neuropsychiatric Syndrome) – Is a syndrome seen in children often misdiagnosed as a primary psychiatric problem and therefore mistreated. Across the US, hundreds of children develop PANS/PANDAS and are referred to mental health clinics or psychiatrists. Mental health treatment alone cannot help reverse the devastating effects of this extremely debilitating syndrome.

Behavioral Health

PANS PANDAS Research

ASPIRE PANS PANDAS Research

Supported by novel animal disease models and clinical research, key advances in our understanding of PANS, PANDAS, post-infectious basal ganglia encephalitis (BGE) and immune-related encephalopathies have emerged over recent years. Large epidemiological studies continue to support the relationship between infectious triggers and neuropsychiatric disorders. Advances in our understanding of neuroimmune dysregulation are shaping future findings in diagnostic and treatment outcomes.

ASPIRE Research packet

Conference & CME Videos

ASPIRE PANS PANDS Videos

Visit the ASPIRE section on Conference Videos and CME Webinars.

Conference & CME Videos

More Clinician Resources

PANS PANDAS ASPIRE Clinicians Doctors resources

ASPIRE continues to provide more resources for clinicians, patients, families, schools, legislators, and more. Look here for interviews with researchers, providers.

Clinician Resources