One Family's Experience With PANDAS
How skepticism about the cause of acute-onset OCD has complicated treatment
Acute-onset OCD, called PANDAS or PANS, has been the subject of controversy in the medical and psychiatric community since it was identified in the late 1990s. What is PANDAS? It’s a series of symptoms, including OCD-like anxiety, which appear virtually overnight, and have been linked to infections, including strep, Lyme Disease, and mono. But not all researchers and clinicians accept the link, and the ongoing skepticism has made treatment extremely difficult for many families.
For Nancy Myers, first-hand experience with the controversy began in 2003, when she got a call to come pick up her son, John, then 6. As it turned out, there has been an incident in the lunchroom involving a fruit cup Myers had packed in John’s lunch, along with a little plastic spoon to eat it with.
The spoon had fallen on the floor, and John got upset. The staff offered to wash the spoon or give him a new one but “he just could not get over it,” Myers recalls. So the principal invited John to come have lunch in her office, and they chatted. From time to time, the principal would say, “Do you think you’re ready to go back to your class now?” John would say, “Yes.” And he’d get up and walk over to the door. But when he put his foot across the threshold he’d melt down again.
In the following years, John had the on-again/off-again OCD symptoms—and other anxieties and dysfunctions—that characterize PANDAS in children, though he had never appeared to get strep, and his throat cultures came back negative. Myers was repeatedly told it couldn’t be PANDAS and that PANDAS itself was unsupported by legitimate evidence.
John’s attacks seemed to get more and more severe; his functioning declined dramatically. By the time he was 12, he was no longer going to school, had been on several different selective serotonin reuptake inhibitors (SSRIs), as well as antipsychotics, and had finally been enrolled in an outpatient OCD program at a local hospital.
That’s when Myers came across a book called Saving Sammy: Curing the Boy Who Caught OCD by Beth Maloney. Sammy is Maloney’s son, and the book about him describes a similar scenario in which Sammy had spiraled into dysfunction. Like John, he had never shown signs of strep in throat cultures, but after a blood test, he turned out to have elevated levels of strep antibodies. He went on antibiotics and made a dramatic recovery, Maloney writes.
It took Myers a great deal of pleading—and some tears—to persuade her doctors to do the blood tests, and then when John, too, proved to have a hidden strep infection, to treat it with antibiotics. Clinicians told her repeatedly that they didn’t offer that treatment protocol. But she finally got a prescription by wearing down her skeptical but sympathetic pediatrician. “We gave John one dose that night, and a dose the next morning,” Myers recalls. “And the next night, he came down and ate dinner with us at the dinner table. It was the first time he’d done that in five months.”
It was only the beginning of a battle that was to keep John on antibiotics for just under 2 years. Ten years later, he was off the antibiotics and greatly improved, though Myers notes that he will be on the lookout for bouts of OCD in the future.
Myers is hopeful that the medical establishment will get behind the use of antibiotics to treat this debilitating condition. “I think ultimately we’re going to get the medical community turned around on this,” she says. “I’m just hoping it’s going to be fast enough for a lot of people.”
The syndrome called PANDAS (pediatric autoimmune neuropsychiatric disorder associated with streptococcus) was so named because its onset was linked to infections, including strep. Because that link has not been accepted by all clinicians and researchers, in 2010 it was renamed PANS (pediatric acute-onset neuropsychiatric syndrome), which makes no reference to a cause.
Related: Parents Guide to PANS and PANDAS