About PANDAS, PANS, and AE

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About PANDAS, PANS, and AE

PANDAS Network 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). Armed with an impressive network of doctors, researchers and scientists, PANDAS Network strives to collaborate with subject matter experts, build public awareness, provide family support, and gather data and resources to better inform parents and the medical community about PANDAS and PANS.

What is PANDAS?

PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) occurs when strep triggers a misdirected immune response and results in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life changing symptoms such as OCD, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, restrictive eating, and more.

Swedo described PANDAS in the 1990s while studying a childhood condition called Sydenham Chorea.  The rare disorder can occur with rheumatic fever, the heart condition that can develop when a Group A strep infection goes untreated.  Patients with Sydenham Chorea have rapid, irregular involuntary movements of the arms, legs, trunk, and facial muscles, in addition to psychiatric symptoms.  

These diseases are very similar.  Neurologists believe it affects the basal ganglia of the brain.  Both illnesses (PANDAS and Sydenham Chorea) may be renamed 'basal ganglia encephalitits' by a consortium in 2019-2020.

PANDAS Network estimates that PANDAS/PANS affects as many as 1 in 200 children.

Learn more about the basal ganglia here

PANDAS CRITERIA

The hallmark trait for PANDAS is sudden acute and debilitating onset of intense anxiety and mood lability accompanied by Obsessive Compulsive-like issues and/or Tics in association with a streptococcal-A (GABHS) infection that has occurred immediately prior to the symptoms. In some instances, the onset will be 4 to 6 months after a strep infection because the antibiotics did not fully eradicate the bacteria. Many pediatricians do not know the latent variability of strep – Rheumatologists and Streptococcal Experts do.

When strep cannot be linked to the onset of symptoms, the NIMH states one should look into the possibility of PANS (Pediatric Acute-onset Neuropsychiatric Syndromes).

The acute onset means a Y-BOCS (Yale Brown Obsessive-Compulsive Scale) score of >20 and or a Chronic Tic Disorder YGTSS (Yale Global Tic Severity Scale) often with multiple tics. Below is the symptom criteria for PANDAS. Additional symptoms may be present.

A clinical diagnosis of PANDAS is defined by the following criteria:

  • Presence of significant obsessions, compulsions, and/or tics
  • Abrupt onset of symptoms or a relapsing-remitting course of symptom severity
  • Pre-pubertal onset
  • Association with streptococcal infection
  • Association with other neuropsychiatric symptoms

What is PANS?


PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) is when an infectious trigger, environmental factors, and other possible triggers create a misdirected immune response results in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life changing symptoms such as OCD, severe restrictive eating,  anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, and more.

PANS 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).

The PANS Criteria

PANS is a clinical diagnosis. The following is the “working criteria” as listed 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’s chorea, systemic lupus erythematosus, Tourette disorder or others.

What is AE?


AE (Autoimmune Encephalitis) occurs when the body's immune system mistakenly attacks healthy brain cells, leading to inflammation of the brain. Symptoms may include impaired memory and cognition, abnormal movements, seizures, and/or problems with balance, speech, or vision.  Psychiatric symptoms can include aggression, inappropriate or compulsive behaviors, aggression or fear. Symptoms may fluctuate, but often progress over days to a few weeks

Typical Encephalitis is different than PANDAS. It is an inflammation caused by a viral or bacterial infection that is present in the brain and physical deterioration is often rapid and severe and it is easily detected via an MRI. This dangerous elevation of symptoms does not typically  occur in PANDAS and PANS. New research, however, shows that autoimmune encephalitis is far more prevalent as shown in Autoimmune encephalitis epidemiology and a comparison to infectious encephalitis (2018).

In THE LANCET Neurology article (2011) Autoantibodies associated with diseases of the CNS: new developments and future challenges, neurologists link PANDAS and possible encephalopathy. 

What is PANDAS?

PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) occurs when strep triggers a misdirected immune response and results in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life changing symptoms such as OCD, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, restrictive eating, and more.

Swedo described PANDAS in the 1990s while studying a childhood condition called Sydenham Chorea.  The rare disorder can occur with rheumatic fever, a heart condition that can develop when a Group A strep infection goes untreated.  Patients with Sydenham Chorea have rapid, irregular involuntary movements of the arms, legs, trunk, and facial muscles, in addition to psychiatric symptoms.  

These diseases are very similar.  Neurologists believe it affects the basal ganglia of the brain.  Both illnesses (PANDAS and Sydenham Chorea) may be renamed 'basal ganglia encephalitis' by a consortium in 2019-2020.

PANDAS Network estimates that PANDAS/PANS affects as many as 1 in 200 children.

Learn more about the basal ganglia here

PANDAS CRITERIA

The hallmark trait for PANDAS is sudden acute and debilitating onset of intense anxiety and mood lability accompanied by Obsessive Compulsive-like issues and/or Tics in association with a streptococcal-A (GABHS) infection that has occurred immediately prior to the symptoms. In some instances, the onset will be 4 to 6 months after a strep infection because the antibiotics did not fully eradicate the bacteria. Many pediatricians do not know the latent variability of strep – Rheumatologists and Streptococcal Experts do.

When strep cannot be linked to the onset of symptoms, the NIMH states one should look into the possibility of PANS (Pediatric Acute-onset Neuropsychiatric Syndromes).

The acute onset means a Y-BOCS (Yale Brown Obsessive-Compulsive Scale) score of >20 and or a Chronic Tic Disorder YGTSS (Yale Global Tic Severity Scale) often with multiple tics. Below is the symptom criteria for PANDAS. Additional symptoms may be present.

A clinical diagnosis of PANDAS is defined by the following criteria:

  • Presence of significant obsessions, compulsions, and/or tics
  • Abrupt onset of symptoms or a relapsing-remitting course of symptom severity
  • Pre-pubertal onset
  • Association with streptococcal infection
  • Association with other neuropsychiatric symptoms

What is PANS?

PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) is when an infectious trigger, environmental factors, and other possible triggers create a misdirected immune response results in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life changing symptoms such as OCD, severe restrictive eating,  anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, and more.

PANS 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).

The PANS Criteria

PANS is a clinical diagnosis. The following is the “working criteria” as listed 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’s chorea, systemic lupus erythematosus, Tourette disorder or others.

What is AE?

AE (Autoimmune Encephalitis) occurs when the body's immune system mistakenly attacks healthy brain cells, leading to inflammation of the brain. Symptoms may include impaired memory and cognition, abnormal movements, seizures, and/or problems with balance, speech, or vision.  Psychiatric symptoms can include aggression, inappropriate or compulsive behaviors, aggression or fear. Symptoms may fluctuate, but often progress over days to a few weeks

Typical Encephalitis is different than PANDAS. It is an inflammation caused by a viral or bacterial infection that is present in the brain and physical deterioration is often rapid and severe and it is easily detected via an MRI. This dangerous elevation of symptoms does not typically  occur in PANDAS and PANS.

In THE LANCET Neurology article (2011) Autoantibodies associated with diseases of the CNS: new developments and future challenges, neurologists link PANDAS and possible encephalopathy.