BURLINGAME (CBS SF) — A gathering in Burlingame drew a sellout crowd of parents last week whose children are afflicted with a mysterious brain illness, one that Stanford University has now dedicated a clinic to its research.
The disease called PANS, or Pediatric Acute-Onset Neuropsychiatric Syndrome, is so new that many doctors don’t recognize it.
“Our son was a fairly normal kid,” Paul Nelson, one of the parents said.
Now 12 years old, Paul’s son, Paul Michael, appears to be normal, but in 2007 he began having unexplained psychotic episodes.
“In the night, he was tearing up flooring. He took a knife to the office door,” Paul said.
When some doctors wouldn’t believe the Nelsons, they videotaped one of the hundreds of episodes, some so violent that the boy had to be restrained.
“He was on his knees barking like a dog, and wasn’t speaking English,” Paul said.
Over the past five years, Paul Michael has been hospitalized fifty times, removed from the home by police 28 times, and received two years of in-patient treatment.
At the time, there was no name for what he had.
“As a parent, you want tests to be negative, but he is a sick kid, and by this point, we are four to five months into this,” Paul said.
Finally, a blood test test came back positive. The diagnosis was PANS. Doctors at Lucille Packard Children’s Hospital at Stanford said its not a psychiatric problem, its a medical problem. They started aggressive treatment immediately.
The syndrome is so new, doctors are still trying to figure out exactly how many children are affected, but it’s estimated that one in 200 kids may suffer from PANS. However, David’s case is more severe than most.
Current medications only treat the psychiatric symptoms of PANS, but not the underlying auto-immune disease. More research is needed before a treatment is developed.