What is PANDAS/PANS?
PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus) is characterized by an acute onset of obsessions and compulsions and/or tics following a Group A Streptococcal (GAS) infection. Other symptoms may follow, including, for example: restricted eating, separation anxiety, general anxiety, sleep disorders, personality changes, severe mood swings, irritability, ADHD-type behaviors, dysgraphia, loss of math skills, urinary frequency and incontinence, explosive rage, extreme impulsivity, and suicidal ideation. All symptoms invariably wax and wane.In extreme cases, all facets of daily life can be affected such that some patients may become unable to speak, eat, or even dress themselves; these patients may not be able to attend school and may need to be hospitalized. It is a disorder that affects the entire family.
PANDAS is part of a broader category of disorders called PANS (Pediatric Acute Onset Neuropsychiatric Syndrome) which presents in much the same manner, but for which the trigger may not be known. The requisite symptoms are obsessions and compulsions and/or severely restricted food intake; other symptoms may include those listed above.
Aside from strep, triggers could be, for example, bacteria such as Borrelia burgdorferi (Lyme disease), Bartonella, and Mycoplasma pneumoniae (walking pneumonia) or viruses such as herpes simplex and even the common cold.
Tragically, individuals with PANDAS/PANS, due to brain inflammation, may impulsively engage in behaviors that inadvertently — that is, without intention or awareness of what they are doing — lead to serious injury and even death. If they survive, anecdotal evidence suggests that many of these individuals may not remember the incident.
Source: Columbia University, Agalliu Lab, Department of Neurology
In some people, after repeated infections, the antibodies produced by the immune system appear to go rogue; they cross the blood-brain barrier and target neurons in the basal ganglia part of the brain, likely causing inflammation and consequent neuropsychiatric symptoms.
Both PANDAS and PANS are more likely to occur in childhood but can and do occur in adolescence and, as was the case with Alex, in adulthood. Why some people are so adversely affected by common diseases such as strep is not fully understood. Genetics is believed to play a significant role.
For more information about post-infectious neuroimmune disorders — also known as PANDAS, PANS, and Autoimmune Encephalitis — please visit our resources page.