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PANDAS/PANS

What is PANDAS/PANS:

PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome.

PANDAS is a subset of PANS and stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.

PANS/PANDAS is a misdirected immune response, often with an encephalitic onset, which negatively affects neurologic functioning, resulting in a rapid, acute onset of OCD, restricted food intake, or tics along with other neuropsychiatric conditions (SEPPA, 2017). Some children suffer debilitating flares while others function enough to continue to go to school, but not remotely at the same functioning level. PANS/PANDAS symptoms may relapse and remit. During subsequent flares, symptoms can worsen and new symptoms may manifest. Initial triggers and secondary triggers may vary. Children are often misdiagnosed as having a psychiatric illness and thus prescribed only psychotropic medications rather than being treated correctly.

PANS and PANDAS are severe forms of Obsessive-Compulsive disorder (OCD) that appear suddenly (acute onset) in young children, accompanied by other confusing and distressing symptoms. PANS and PANDAS are episodic disorders. Symptoms may disappear for extended periods and then reappear, stimulated by later exposure to strep or some other bacteria or virus. Symptoms may get increasingly severe with multiple recurrences.

A child may be diagnosed with PANDAS when Obsessive-Compulsive Disorder (OCD), tic disorder, or both suddenly appear following a streptococcal (strep) infection, such as strep throat or scarlet fever. The symptoms of OCD or tic symptoms suddenly become worse following a strep infection.

PANS is a clinical diagnosis based on history and physical examination. PANS encompasses the whole group of acute onset cases of OCD or eating restrictions, concurrent with acute behavioral decline of at least 2 of 7 neuropsychiatric categories. A PANS diagnosis does not require a known trigger, however, it is often following the contraction of/or exposure to a variety of agents including: Streptococcus pyogenes; Borrelia burgdorferi; varicella; herpes simplex; common cold; influenza Mycoplasma pneumoniae (walking pneumonia); as well as other non-infectious agents such as environmental factors. PANS cases have also been linked to other infections, including Lyme disease, mononucleosis, mycoplasma, and the flu (such as H1N1).

COMMON QUESTIONS:
  • Why is there so much controversy surrounding PANDAS and PANS? 
  • What are the causes? 
  • How is PANDAS diagnosed?
  • What are the other symptoms associated with PANDAS episodes? 
  • What if your child’s doctor does not understand or does not want to consider PANDAS? 
  • What are the treatment options for children with PANDAS? 
WEB RESOURCES:

The following websites are currently the most credible, science-based resources to answer these and other related PANDAS/PANS matters:
The National Institute of Mental Health (NIMH) PANDAS Resources

The International OCD Foundation PANDAS Resources

The Child Mind Institute PANDAS Resources

The Southeastern PANS/PANDAS Association (SEPPA): a group of medical professionals and parents who have teamed up to raise awareness of Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) and a subset of PANS called Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS)

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