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BURLINGAME -- Nearly 200 parents of children with a complicated, mysterious brain illness called PANS gathered over the weekend to seek advice and support from each other as they navigate the disease, which triggers psychotic and compulsive behaviors.
PANS is believed to be caused by an infection or other trigger that causes the immune system to mistakenly attack the brain and swell it, resulting in extreme obsessive-compulsive disorder, cognitive regression, sleeplessness and other disabling behaviors.
a diagnosis of PANS is so new and controversial that most pediatricians across the country haven't even heard of the afflictions, leaving many children locked in psych wards or wreaking havoc at home. A small group of critics suggest the disease doesn't exist and argue that any improvements children see might be caused by the placebo effect
But Dr. Susan Swedo from the National Institute of Mental Health, who has been studying the condition since the 1980s, and Dr. Jenny Frankovich, a rheumatologist at Lucile Packard at Stanford who treats Tessa, say the disease is very real. The PANS clinic at Stanford, which Frankovich recently opened with child psychiatrist Kiki Chang, needs funding for research, Frankovich said, and the clinic is seeking donors.