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 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 then reappear, stimulated by a later exposure to strep of 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. PANS diagnosis does not require a known trigger, however it is often following 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).
Why is there so much controversy surrounding PANDAS and PANS
What are the causes
How is PANDAS diagnosed
What the other symptoms associated with PANDAS episodes
What to do if your child’s doctor does not understand or does not want to consider PANDAS
What are the treatment options for children with PANDAS
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)