Diagnosing PANS and PANDAS
Understanding the diagnostic process and criteria is important for both medical providers and for parents.
Official Diagnostic Criteria for Diagnosing PANS and PANDAS
In 2013, the National Institute of Mental Health convened a consortium of PANS/PANDAS researchers and clinicians at Stanford to develop diagnostic guidelines. PANS is a clinical diagnosis and a diagnosis of exclusion; a diagnosis based on analysis of the child’s medical history, current symptoms, and physical examination. Lab work and additional testing can be ordered to identify an infectious trigger, rule out other diagnoses, and inform treatment plans. A diagnosis of PANS PANDAS is clinical and never based on one or two test results. The disease course is typically relapsing and remitting but can become chronic/static. Learn more about PANS PANDAS Symptoms.
- 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:
- 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
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.)
1. Review Symptoms, Medical History, Physical Exam
If a parent or provider suspects PANS/PANDAS as a cause of neuropsychiatric symptoms, the first step in Diagnosing PANS and PANDAS is to perform a complete medical and psychiatric history, and medical exam. Take care to document past infections and the onset of neuropsychiatric symptoms. Family history reveals high rates of OCD, Sydenham Chorea, Rheumatic Fever, and Autoimmune disease in patients’ parents and grandparents.
Parent Tip: If you think your child might have PANS/PANDAS, take time before your medical appointment to compile a detailed medical history with all infections and symptoms. There are PANS/PANDAS Symptom Tracking Tools to track onset of symptoms, severity of symptoms, and secondary flares. ASPIRE has also created a guide and tools Your First Appointment.
Physical Signs: Patients can have many physical signs of illness that can influence diagnosis and treatment protocols.
- Eyes can be dilated.
- Patients can have vision issues, including distortions or hallucinations.
- Rheumatologic workups reveal that 80% of PANS patients have arthralgias, myalgias, and other evidence of inflamed joints & muscles.
- Patients may have “Piano Fingers” movements, which are different from the more significant movements seen in Sydenham Chorea.
- There are physical signs of strep: Peeling skin on hands or feet, red anal ring, strawberry tongue.
- There are physical signs of other infections: warts, molluscum, ringworm, ridged nails, etc.
- Trichotillomania (hair pulling) or Skin Picking
2. Lab Work
After reviewing the child’s history, the next step in diagnosing PANS and PANDAS is utilizing lab work to identify inciting infections.
“Careful consideration of possible inciting infections is important at both the initial onset and symptom exacerbations of PANS or PANDAS. A detailed history of exposures to contagious illnesses should be obtained, with cognizance of their associated incubation periods. Physical examination should focus on infection at any site, including dental, pharyngeal, lymphatic, and perianal and all other skin sites.” Reference: Clinical Management of Pediatric Acute-Onset Neuropsychiatric Syndrome: Part III—Treatment and Prevention of Infections – JCAP Vol27, #7, 2017 – Cooperstock, MD, MPH, Swedo, MD, Pasternack, MD, Murphy, MD
Basic labs should include:
- Strep throat culture, 48-hour culture and/or perianal culture
- Bacteria & Virus Blood Work:
- Anti-Streptolysin (ASO)
- Anti DNase B
- Mycoplasma Pneumoniae
- Pneumococcal Antibody
- Epstein Barr Virus Panel
- Coxsackie A & B Titers
- Lyme Disease and co-infections: Lyme Western Blot & Elisa, Babesia microti & duncani, Bartonella, B. Miyamotoi, Ehrlichia, Anaplasma
- Immune System & Autoimmune Testing:
- IgE Level
- IgA, IgG, IgM
- IgG (subclass 1, 2, 3, 4)
- Streptococcus Pneumoniae Serotypes
- Serum Copper
- Vitamin D
- Plasma Amino Acids
- Organic Acids Test
- Stool Testing
- Free T3 & T4 and TSH (Thyroid)
- Note: this test is not required for diagnosis and not necessary for many PANS PANDAS patients. Please refer to the PPN Treatment Guidelines for more information.
- autoimmune autoantibody levels: Dopamine D1 receptor, Dopamine D2L receptor, Lysoganglioside GM1, Tubulin, & CamKinase
3. Imaging or Other Testing to Rule Out Other Conditions
PANS/PANDAS is a diagnosis of exclusion, meaning symptoms cannot be better explained by another diagnosis. Depending on a child’s presentation and the severity of symptoms, further testing is often advised. Other testing might include:
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