In the end, Garrett got lucky. A hospital scan three months later revealed a bacterial sinus infection. A course of antibiotics cured the infection and markedly improved his psychiatric symptoms. Garrett suffered from PANDAS, which stands for Pediatric Autoimmune-Neuropsychiatric Disorders Associated with Streptococcus.
Many other children are not so lucky; some have suffered long-term damage. In plain English, Garrett’s disturbing behavior was the result of an immune system that had gone haywire after an infection with group A Streptococcus, a common bacteria. (A similar disease, caused by other infections, goes by the abbreviation PANS, which stands for Pediatric Acute-onset Neuropsychiatric Syndrome.)
Yet many doctors have heard of neither PANDAS nor PANS. Some have dismissed them as fictional diseases. Very few countries provide guidance on their diagnosis or treatment. Diana Pohlman, Garrett’s mother, says she is “exhausted” from years of campaigning to get doctors to take the diseases seriously.
That is starting to change. Scientists are beginning to characterize the conditions in detail and determine exactly what goes wrong with patients’ immune systems. On September 12, Maria Caulfield, a British health minister, intervened and told lawmakers that PANDAS and PANS exist and are caused by infections.
Such efforts start from a low base. In a 2020 survey for PANS PANDAS UK, a charity, 95% of parents whose children have PANDAS said their GPs had not offered the diagnosis, suggesting that awareness is low. Things only went slightly better among the specialists. About half of pediatricians said they had never heard of the disease. Nearly one in five parents surveyed said their pediatrician found the diagnosis controversial.
That ignorance comes at a cost. In many countries, children with PANDAS are presented with an alphabet soup of psychiatric misdiagnoses. These may include attention deficit hyperactivity disorder, autism, and sensory processing disorders. Children may be given inappropriate medications such as antipsychotics, many of which have unpleasant side effects and do nothing to treat the cause of their illness.
In some cases, parents have been accused of fabricating or causing their children’s illness. The economist has spoken to parents who say their children have been admitted to the mental health system against their will, or removed from their care altogether. According to testimony in parliament, a doctor told a child he would not treat “an American disease.” In 2019, several dozen children with PANDAS and PANS were discharged from a British hospital. Their parents were told they had a ‘functional neurological disorder’. ” – a diagnosis that evolved from the old (and discredited) idea of hysteria, and which some doctors grimly joke that it means “not finding a diagnosis.”
Exactly why the diagnosis is controversial remains unclear. After all, the idea that the aftermath of an infection can cause psychiatric complaints is not new. Sydenham’s chorea, in which patients suffer from jerky movements of the face and body, is also the result of a streptococcal infection. The Economist has contacted a number of psychiatrists and professional bodies for comment. Some didn’t answer. Others said they could not comment. The Royal College of Psychiatrists said it was struggling to find an available spokesperson.
The body and the mind
But as evidence mounts that PANS and PANDAS are real, views are starting to change. Scientists studying the condition now think it is caused by an autoimmune response, in which the body’s immune system mistakenly attacks brain tissue. After infection with Streptococcus, the theory goes, children begin to produce antibodies that cause inflammation in their own brains, which in turn causes the psychiatric symptoms.
In 2018, Christopher Pittenger, a psychiatrist at Yale University, and his colleagues extracted antibodies from the blood of children with PANDAS and introduced them into laboratory mice. They found that the antibodies mainly attacked cholinergic interneurons, a group of cells in parts of the brain associated with tic disorders, one of the hallmarks of PANDAS. Chandra Menendez, a researcher at the University of Oklahoma Health Sciences Center, says she has found a “correlation between antibodies targeting dopamine receptors D1 and D2 and the PANDAS phenotype.” This type of work could help develop diagnostic tests.
A paper by Dritan Agalliu, a neurologist at Columbia University, currently reviewed by a scientific journal, suggests that blocking a certain part of the immune system – a type of lymphocyte called T-helper 17 cells – with immune-suppressing drugs can reduce damage to the immune system decreases. brain, at least in mice. Other research suggests that damage to the blood-brain barrier, a filter designed to protect the brain from potentially harmful substances in the blood, could also be part of the story.
Such findings may have significance beyond a single obscure, debilitating disease. Because they fit into an intriguing and growing body of evidence that other types of psychiatric conditions can also result from infections. Dr. Pittenger says it is now clear that Covid-19 infections can cause psychosis, fatigue and other neuropsychiatric symptoms. A misbehaving immune system is believed to be the culprit. The idea that schizophrenia can, at least sometimes, also be an autoimmune disease is also being explored. (Intriguingly, people with any autoimmune disease are about 40% more likely to develop psychotic disorders such as schizophrenia.)
How long it takes for doctors to notice this change in thinking is another matter. Some of the incentives no longer come from patients, but from governments. Robin Millar, a British MP and chair of a parliamentary group on PANDAS and PANS, says the British government is determined to find out how to diagnose and assess the diseases. It has started talks with doctors and is considering a research project to find out how common the diseases are. A pan-European patient group called EXPAND, founded in 2018, is also committed to improving understanding.
Such efforts are desperately needed. As the case of Garrett Pohlman shows, treatment can be very effective if infections are caught early, preventing long-term damage. Mr. Pohlman, now 23, graduated with honors from the University of California, Berkeley, in chemical engineering in 2022 and today runs his own company. Not every patient has been so lucky.
Correction (September 22, 2023): An earlier version of this article described the use of anti-inflammatory medications to reduce brain damage. Immunosuppressant drugs were even used. Sorry for the mistake.
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