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PANS

Heirachy of PANS
PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) was introduced in 2012 by Dr. Susan Swedo in the paper From Research Subgroup to Clinical Syndrome: Modifying the PANDAS Criteria to Describe PANS (Pediatric Acute-onset Neuropsychiatric Syndrome).

As seen by the hierarchy chart to the right, PANDAS is now considered a subset of PANS. PANDAS and PANS are likely related, but doctors are working to find ROOT causes.

The field of PANS research is new. Currently, there is not much information to provide except for the 2012 White Paper and our current knowledge of its subset, PANDAS.

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PANS Frequently Asked Questions

What is the difference between PANDAS and PANS?

What is the criteria of PANS?

What tests should I do if strep is not the indicated trigger?

My child was diagnosed with PANS. How do we treat it?

Does PANDAS still “exist” or does PANS replace it?

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What is the difference between PANDAS and PANS?

PANDAS is when specifically strep is connected to the sudden onset of OCD and/or tics along with other listed clinical symptoms. PANS removes the emphasis of the etiologic factor and concentrates on the clinical symptoms. PANS can be triggered by any infectious agent (NOT only strep) in addition to non-infectious triggers which are yet to fully determined, but may include metabolic disorders and environmental factors. Symptoms cannot be explained by any other neurological or medical disorder.

PANDAS and PANS have slightly different diagnosing criteria.

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What is the criteria of PANS?

PANS is a clinical diagnosis. The following is the “working criteria” as listed in Dr.Swedo’s paper on PANS:

  1. Abrupt, dramatic onset of obsessive-compulsive disorder or severely restricted food intake.
  2. Concurrent presence of additional neuropsychiatric symptoms, with similarly severe and acute onset, from at least two of the following seven categories:
    Anxiety
    Emotional lability and/or depression
    Irritability, aggression and/or severely oppositional behaviors
    Behavioral (developmental) regression
    Deterioration in school performance
    Sensory or motor abnormalities
    Somatic signs and symptoms, including sleep disturbances, enuresis or urinary frequency
  3. Symptoms are not better explained by a known neurologic or medical disorder, such as Sydenham chorea, systemic lupus erythematosus, Tourette disorder or others.

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What tests should I do if strep is not the indicated trigger?

When strep does not appear to be the initial trigger, one should looks into PANS as it encompasses a wide variety of possible triggers. Some suggested tests appear on the DIAGNOSTIC TEST SECTION of this website.

A special note was also made in the landmark PANS paper stating, “The diagnostic work-up of patients suspected of PANS must be comprehensive enough to rule out these (Sydenham chorea, systemic lupus erythematosus,Tourette disorder or others.) and other relevant disorders.The nature of the co-occurring symptoms will dictate the necessary assessments, which may include MRI scan, lumbar puncture, electroencephalogram or other diagnostic tests.”

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My child was diagnosed with PANS. How do we treat it?

No concrete treatment plan for this syndrome has been offered at this time by the NIMH but treatment plans similar to PANDAS should be attempted. If the onset of symptoms are corresponding to an infection, PANS children may have moderate to dramatic improvement with the appropriate antibiotics within one week of treatment, however, further interventions may be needed. Many parents and doctors report prolonged antibiotics (two months to one year) and/or IVIG (intravenous immunoglobulin) treatment or plasmaphoresis may be beneficial.

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Does PANDAS still “exist” or does PANS replace it?

PANDAS is still recognized by the NIH, practitioners, and researchers as a legitimate disorder. PANS broadened the criteria and includes the subset of PANDAS. But PANS did not replace PANDAS.  PANS is not be confused with a PANDAS child that begins to react to non-strep triggers. As noted in Dr. Swedo’s landmark paper on PANDAS, that even though strep is the initial trigger in PANDAS, subsequent exacerbations can still occur as the result of other assaults on the immune system. It states, “…Primary responses are specific (e.g., directed against a particular epitope on the GABHS), while secondary responses are more generalized. Thus, the lack of evidence for a preceding strep infection in a particular episode does not preclude the diagnosis of PANDAS…however,that the diagnosis cannot be made without establishing a clear association between GABHS infection and symptom exacerbation…”.