Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) and the related PANS (pediatric acute-onset neuropsychiatric syndrome, which has similar symptoms but no identified strep trigger) are mysterious and controversial diagnoses that link psychological symptoms with a physiological trigger; specifically, inflammation brought on by an infection, such as strep throat. The condition is marked by the sudden development of intense OCD, mood swings, rage, and anxiety.
Researchers hypothesize that the infection triggers an autoimmune response that specifically leads to swelling in parts of the brain, which then prompts the range of psychological symptoms. But some doctors dismiss the diagnosis, instead seeing the symptoms as part of the broader spectrum of OCD and psychological disorders.
Some families whose children are able to get the most intense autoimmune treatments have found it radically helps their children live with the condition. Others languish in treatment purgatory as they await coverage of the costly infusions from insurers who want to see stronger science for the therapy.
“The trick is to be skeptical and open minded, which is a hard tightrope to walk,” said Schlozman, a doctor specializing in pediatric psychiatry at UVM Health. From his clinic, he knows that a PANDAS diagnosis is right for some patients, but he is also wary of signing a child up for the risks of treatment. Side or after effects of intravenous infusion of immune system antibodies, or IVIG, for treatment of PANDAS—which can include vomiting, headache, allergic reactions and anaphylaxis, and neuropsychiatric reactions—can be serious.
“If they need it, that’s great, but I certainly don’t want to commit anybody if they don’t need it,” Schlozman said. Also, “it’s really, really, really, really expensive,” he said, and some insurers cover IVIG and some don’t.
A bill introduced in the Senate Finance Committee this year would require insurers to cover treatment for PANDAS and PANS that a clinician deemed medically necessary, but sponsors are not optimistic that it will pass this session.