HIDDEN INVADERS, Discover 2017
Updated: Jul 8, 2018
Infections can trigger immune attacks on kids' brains, provoking devastating psychiatric disease.
At 7 years old, Paul Michael Nelson was the kind of quiet, brilliant kid you were likely to find in Silicon Valley — captivated by Legos, self-taught in origami, loving and sweet. But on March 2, 2009, he woke up in the middle of the night, monstrously changed. He tore up the flooring in his bedroom. He got hold of a knife and stabbed holes through his door. He began speaking a strange language no one could understand. He tried pulling his teeth out. He barked like a dog.
His parents hustled their son to the psychiatrist, leading to an alphabet soup of diagnoses: ADHD (attention deficit hyperactivity disorder), OCD (obsessive-compulsive disorder), ODD (oppositional defiant disorder), bipolar disorder, autism and, ultimately, straight-up psychosis. Yet no matter what medications Paul Michael tried, treatment failed. He leaped from moving cars. He broke the windows in his room, causing the family to install Plexiglas. For the Nelsons, 2009 included 15 trips to the emergency room, two months in and out of psych wards and calls to the sheriff to remove a violent, raging Paul Michael from the home.
Finally, experts suggested that he might not suffer from a traditional psychiatric disorder caused by some inborn biochemical glitch, but from a vasculitis — a swelling of blood vessels in the brain, provoked by a hostile outside force. So the Nelsons were sent to Stanford University, where pediatric rheumatologist Jennifer Frankovich already had some experience treating the psychiatric symptoms of autoimmune disease — a frightening scenario in which the body turns on itself and attacks the brain. Twenty vials of his blood helped tell the story: Dangerously low blood platelets suggested an underlying imbalance, and signature proteins signaled some type of autoimmunity at the root.
Thus commenced years of trial-and-error therapy, conducted mostly in a psychiatric ward. Frankovich and her colleague, psychiatrist Margo Thienemann, first prescribed steroids to dial down Paul Michael’s immune response. But the symptoms abated only slightly, and his small body ballooned. Then, they shut down his immune system altogether with the chemotherapy drug Rituximab. To boost it back up and keep inflammation down, they added intravenous immunoglobulin, or IVIG, a total immune system-replacement made from the blood of thousands of healthy individuals. Frankovich hoped the approach would work, but Paul Michael’s brain was potentially damaged, she warned, and it could take years to repair. It was late in 2013 when sweet, smart Paul Michael, rescued by years of treatment, finally stepped out of the psych ward and back into his life. Today a gentle young man of 15, he goes to public school and hopes to be a pastry chef. “He’s an amazing baker,” says his mother, Mary Nelson.