By Amy Dockser Marcus
July 12, 2015
MENLO PARK, Calif.—At the age of 7, Garrett Pohlman came home from the first day of second grade and was “a totally different person,” his mother said. Garrett experienced a sudden and dramatic onset of obsessive-compulsive disorder and other symptoms. He was weeping and terrified to go back to school.
At the time, Garrett had also been battling case after case of strep throat. His mother, Diana Pohlman, thought there might be a connection.
Doctors and psychiatrists have long debated whether there is a link between infections and certain psychiatric disorders, including OCD.
During the past few years, the notion has been earning more recognition in the scientific community. Resources have followed, including the creation in 2012 of a Stanford University clinic dedicated to studying and treating the condition, known most commonly as PANS, for pediatric acute-onset neuropsychiatric syndrome.
About 1% of children and adolescents in the U.S. have OCD, which can include symptoms such as fears of contamination and repetitive actions such as hand-washing. But since no large population studies have been done on the condition, no one knows how many of those cases might be considered PANS. Not all pediatric specialists agree PANS is a distinct disorder.
Some doctors say that children should be tested for infections such as strep throat if they experience dramatic and sudden-onset OCD to see if treatment with antibiotics improves symptoms. In some cases where pediatric patients have multiple relapses associated with strep infections, long-term use of antibiotics might be effective in preventing them, the doctors say.
Others contend that, until the data show a stronger connection, children should get standard care for OCD, usually cognitive-behavioral therapy and antidepressants.
In a special issue of the Journal of Child and Adolescent Psychopharmacology devoted to PANS published earlier this year, researchers of one paper studied the first 47 patients who came through the Stanford clinic and found that no one set of symptoms or causes tied the cases together neatly.
For instance, only 40% of the patients in the study had an acute onset of their symptoms, which many consider the very heart of the definition of the disorder.
Donald L. Gilbert, a neurologist at Cincinnati Children’s Hospital Medical Center, said he doesn’t believe the data support treating sudden-onset OCD with antibiotics, infusions of antibodies or steroids, all of which have been used to treat PANS.
“The long-term course is not different” than other types of OCD, he said. With or without an infection, these children would have gotten OCD anyway, he argued, and most children also respond to the standard therapies.
Still, “I think there ought to be a continuing quest to understand things that cause suffering that we don’t treat well,” Dr. Gilbert said, “and psychiatric illnesses fall in that category.”
A network of physicians, including at Massachusetts General Hospital in Boston, the University of South Florida and elsewhere, hold regular conference calls sharing strategies on treating PANS patients and running trials.
Nowhere is the change in approach more noticeable than in the heart of Silicon Valley, where the PANS clinic at Stanford’s Lucile Packard Children’s Hospital—fueled in part by advocacy of parents like Ms. Pohlman and the local entrepreneurial ethos—is adding medical staff during the summer and fall.
The clinic has seen 150 patients since it opened three years ago and has a long waiting list. The clinic currently sees only patients who live within a 90-mile radius. Even so, it can’t keep up.
The cost of running the clinic is funded by Stanford Children’s Health and the Lucile Packard hospital. Other backing is being provided by the National Institute of Mental Health, including research support to build a PANS database and biological-materials repository.
Stanford convened the First PANS Consensus Conference in 2013 and researchers in the growing field came up with recommendations on how to diagnose patients that were published earlier this year.
Researchers met at the NIMH for a second conference last year, and a third one is planned for the fall. The scientists plan to finalize guidelines on how to treat PANS and create a database to track how patients at different institutions fare on various treatments.
Ms. Pohlman, who lives down the street from Stanford, said that when Garrett’s symptoms cropped up eight years ago, long before the clinic opened, she had to cobble together treatment for him from a range of specialists.
Her son, now 15 years old, took antibiotics off and on for a year before receiving infusions of antibodies from healthy donors, known as intravenous immunoglobulin, or IVIG, and today has no signs of OCD or tics, Ms. Pohlman said. The experience prompted her to found an advocacy group that funds research and runs conferences where families and scientists mingle. Ms. Pohlman describes the efforts to get attention for the condition as being “like a startup” in that families have helped drive attention and resources to the disorder.
Jennifer Frankovich, a pediatric rheumatologist at Lucile Packard and director of the Stanford PANS clinic and research program, said the idea to set up a dedicated clinic grew from seeing patients who had both medical and psychiatric symptoms. Some noted improvement in the psychiatric symptoms after their medical condition was treated.
Dr. Frankovich and Kiki Chang, founder of the pediatric bipolar disorders program at Stanford, decided to start seeing and treating patients together. “We are still trying to learn the boundaries of PANS,” Dr. Frankovich said.
In an effort to establish the science of PANS, the Stanford clinic is collecting extensive data on the patients. Doctors try to piece together what is driving symptoms from pediatric records, parent reports, even teacher interviews. They are analyzing DNA samples from each patient and looking for clues in their immune systems. If they find strep, they bank the strain for further research. “It is easier to study something that is established,” Dr. Frankovich said. “To build something new is really hard.”