What is Behind the PANDAS Controversy?
Even twenty years after PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections) was recognized, after numerous studies have added to evidence in support of the condition, a debate continues over whether PANDAS actually exists. The condition remains “controversial” for many primary care doctors.
Why? Aside from egos and financial interests that often hamper medical progress, medicine has a history of being slow on the draw. It took over a decade for the medical community to accept proof that the ulcers in a stomach were caused by a bacteria and not by stress, even with clear documentation. The proof was obtained by the ability to look inside the stomach and biopsy tissue, to take “before and after” photos of stomach ulcers treated with antibiotics.
Yet skulls don’t come with hinges. We can’t open them up and peak inside. Children don’t have the ability to describe how they feel or make an association between the sore throat they have and the compulsive thoughts suddenly telling them to behave in certain ways.
Who are the naysayers?
Some researchers, particularly a few who had crafted careers and reputations in the area of tic disorders, vehemently objected to the hypothesis of PANDAS, repeatedly attacking the idea and making it difficult for a family pediatrician to find definitive research for guidance. They suggested strep is such a common illness that if a child suddenly develops OCD or tics and also contracted strep in the same time frame, it is just be a coincidence, not a cause and effect relationship.
The naysayers did studies that purported to use children who fit Dr. Susan Swedo’s diagnostic criteria for PANDAS and could not find a correlation between the patients’ symptoms and strep infections. Years later, one of the authors of the study unofficially retracted support for this research, reportedly saying that after working more closely with kids who actually did have PANDAS, the subjects in the original study were not properly selected and were not PANDAS kids. Yet no formal retraction has been made.
“A Feverish Debate”
For an understanding of the conflicting research on PANDAS. see this excellent article: A Feverish Debate. A short excerpt from the article follows, discussing the main study (2002) that did not find a connection between PANDAS-type symptoms and strep:
Researchers from six separate medical centers got together in 2002 to address the issue. For two years, they followed thirty-one children who met the criteria for PANDAS and fifty-three who did not. About every three months, they swabbed the subjects’ throats and tested their blood. In the end, there was no evidence that strep uniquely intensified the symptoms in PANDAS kids. Only six strep infections led to worse symptoms within two months, and all of them occurred in the control group, three in one child. The study, published in 2011, has been hailed as strong evidence against strep as the prime instigator.
This study has since come under fire, including criticism from its lead author, James Leckman, a psychiatrist at Yale University in New Haven, Connecticut. He now thinks researchers made mistakes in allocating subjects. The control group may have accidentally included PANDAS patients, and not all of the patients in the PANDAS group were necessarily real cases.
Dr. Leckman now describes himself as “a PANDAS convert.”
Where does that leave parents?
Some studies have had conflicting results, and infections in addition to strep have been determined to cause similar symptoms to PANDAS. However, if you want to find it, there is compelling research to support the existence of PANDAS as a distinct disease quite separate from OCD or Tourette’s, with a treatment protocol that typically includes antibiotics. If you are a naysayer, there are a number of papers, almost always authored by a small group of like-minded researchers, to defend a decision to deny that antibiotics can play a role in the treatment of neuropsychiatric behaviors.
For families, we recommend an excellent reader-friendly article on PANDAS that includes parent viewpoints: See this Boston Globe article.
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