Of microbes and mental health
Common childhood infections can sometimes cause psychiatric conditions
One sunny afternoon last month I was sitting in a local park chatting with a friend who told me her daughter had a condition called PANDAS (which stands for Paediatric Autoimmune-Neuropsychiatric Disorders Associated with Streptococcus).
I’d come across PANDAS before but hadn’t really thought much about it. But her story made me take notice. Her daughter had gone, quite suddenly, from a happy normal child to one with various serious, and worrying, psychiatric conditions. The culprit turned out to be an infection with a common bacterium: Strep a. This had happened a year previously. (in the wake of a big uptick in cases of scarlet fever—which is caused by strep a—a year ago in Britain. This uptick in strep a was mirrored in other countries for reasons that are unclear.)
The idea that serious psychiatric conditions could be brought on quite suddenly by something as simple as a common infection was intriguing. What was disturbing was the wide lack of recognition or interest in this possibility or in the condition more generally. It made me wonder how the sudden onset of obsessive-compulsive disorder, tics, anger and aggression, and a host of other symptoms would not spur curiosity or interest among GPs or psychiatrists. My friend had to wait three months to get a blood test confirming the infection from the National Health Service (NHS). She was concerned that the delayed response to the infection would result in missing the chance to treat the illness promptly to ensure a healthy long-term outcome for her child.
After exploring the story further, I found that my friend’s experience was lamentably common. I spoke to parents in America, Britain, and Europe for a piece that was published last week in The Economist. (The first three readers to make it here can find gift links here, here, and here; or if you register you can get a certain number of free articles, or someone on X (Twitter) has posted a summary of the article.)
One mother told me that her child had a strep infection and the child was terrifying, unrecognisable and aggressive with hugely dilated pupils. The child had very long wait for CAHMS (the NHS mental health service), and were then offered “play therapy”. When they finally managed to see a specialist, and were given antibiotics, and her son started to recover.
The Economist piece talks about how awareness is spreading, albeit very slowly. In Britain, there are a number of signs of a shift in acceptance for PANDAS along with the broader term of PANS (Paediatric Acute-onset Neuropsychiatric Syndrome), which is where psychiatric symptoms are triggered by an infection that is not Strep.
Scientific work on PANS PANDAS points to an auto-immune reaction in the wake of an infection. The antibodies produced target regions of the brain, triggering psychiatric symptoms. Sydenham’s chorea is closely related to PANDAS, is accepted to be the result of a strep a infection, and is also thought to be an autoimmune condition. More broadly, the piece also explains that there is growing awareness of how in adults, too, infections can trigger psychiatric effects, again for reasons of auto-immunity. One study found that people with any autoimmune disorder were about 40% more likely to develop psychotic disorders such as schizophrenia. And thanks to covid we also know that it can trigger psychosis or brain fog, again for reasons of auto-immunity. This is really important stuff and GPs need to know it.
Nobody knows the prevalence of these sorts of auto-immune triggered psychiatric conditions. They seem likely to be unusual. And because they resemble more classic psychiatric symptoms, there are diagnostic challenges. Not every case of OCD or tics, after an infection, will be PANDAS. Nonetheless, for many parents, the diagnostic odyssey is so challenging (and sometimes harmful) that any small improvement in the knowledge of this condition, and support from doctors, would be helpful. Treatment, too, with antibiotics or immune-based medications may also be an option if the condition is considered.
It is hard to understate the burden that this lack of knowledge is placing on PANS PANDAS children and families. During a recent Parliamentary hearing, Members of Parliament (MP) talked about the challenges their constituents had had getting help for their kids. One MP said that a doctor told a child that he would not treat “an American illness”. This is a reference to the wider acceptance of this diagnosis in that country. It is also indicative of what might be described as an “attitude problem” by doctors towards this syndrome. One mother I spoke to, who works in the NHS, said that clinicians who do recognise PANDAS are “scared” to give this as a diagnosis because of the perception of a controversy. Some treat it in the guise of “immune dysregulation”.
The diagnosis has been so problematic that 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 has evolved from the old (and discredited) idea of hysteria, and which some doctors joke grimly means “finding no diagnosis”. In some tragic cases, children and families have been treated terribly badly by professionals of all kinds—from doctors to teachers and social workers.
Doctor: one child was left in the hospital for 56 days continually seizing and it was put down as a functional neurological disorder. And they [the parents] had nowhere to go because if they challenged the system the child was going to be taken away from them. The doctors are saying stop all the antibiotics.
For the article, I contacted the British Paediatric Neurology Association, the Royal College of Psychiatrists, and the Royal College of Paediatrics and Child Health to find out their thoughts. With weeks of notice offered, I couldn’t get a whisper of a comment or engagement that would indicate what these professional bodies think about PANS PANDAS. One can only hope the new British expert group moves quickly.
The lack of engagement from professional bodies makes it difficult for me to outline with confidence what remaining worries (if any) there are about this diagnosis. From what little I have been able to glean, there may be concerns that without good diagnostic guidelines PANS PANDAS might be misdiagnosed in children who actually have autism or ADHD. There is also a hint of concern from professionals that parents may prefer their child to be diagnosed with an infection rather than with a mental health condition because of stigma.
None of this adequately explains the horrendous situation that many parents with PANS PANDAS have found themselves in. Nor is it a satisfactory explanation for the widespread lack of awareness of PANS PANDAS by GPs and psychiatrists. Or for a general failure to respond to suspected cases with blood tests and/or antibiotics. Yes, it can be hard to diagnose. Yes, it is hard to prove definitively that a strep infection has caused acute onset OCD, and yes there is subjectivity involved in some cases. These are all true of many other conditions that we treat with far less fuss. Take depression or anxiety, which doctors seem perfectly happy to diagnose and treat without worrying about subjectivity or accuracy.
Diana Pohlman, a mother of two children with PANDAS and executive director of the PANDAS Network—an American charity—talked to me about how 15 years ago, she realised that a strep infection was causing her son’s mental breakdown. In the years since she has been an advocate for the condition and has helped families around the world and says her organisation has heard of 20,000 cases all in all. Towards the end of the interview, I speculated that the condition might get coverage when a forthcoming pre-print was published in a major journal.
“I don’t think so. Nobody cares,” she replied.
“Why doesn’t anyone care? I asked.
There was a long pause and then almost in a whisper, she said:
“I don’t know. I’m, I’m, I’m broken. I am absolutely near broken. I don’t know. I don’t know. I don’t know.”
There have been no randomised controlled trials, but of the hundreds of children that she has followed closely, she says those who have been treated have had better long-term mental health outcomes.
One strep forward
Awareness in America is ahead of other countries. Europe is still struggling with the issue, according to Rene Blanchard Akre, chair of EXPAND the European Immuno-neuropsychiatric Association. In Britain, though, there are signs of change afoot. In a recent Parliamentary debate, one of Britain’s health ministers Maria Caulfield, acknowledged that while the symptoms of PANDAS mimic a mental illness, “there is very often a physical cause for those developments”. That recognition is an important step, and there is talk about the possibility of a letter being sent out to GPs, and of the need to raise awareness among teachers and social workers.
There is also a newish working group called the PANS PANDAS working group (PPWG), which involves a long list of relevant professional colleges with support from the NHS. The idea is to develop standards of care and to develop the pathways children need to follow to get diagnosis and care.
When the boy had a flare up, caused by another infection they were referred back to a psychiatrist. The mother recalls dryly, “he was late to the meeting because he had been Googling PANDAS, which is always reassuring”. He asked me why on earth we had not seen a neurologist, she recalls. We were fortunate to have the funds to go privately. After more antibiotics and a short course of steroids, we went from a child who was trying to jump out of the car on the way to the neurology appointment to within five days to reporting feeling happy again. He is almost 90% recovered. He’s traumatised. We all are. But we are lucky. We’re lucky we could speak out for ourselves.
Mother: “families are being blamed for their child’s symptoms because the symptoms of PANS and PANDAS are perplexing. And those parents are then accused of fabricating or inducing that illness. There is a very high prevalence of those accusations made against our community.
As a health journalist, I recognise that it is hard to write about conditions where there are remaining scientific uncertainties and where clinicians have not clearly codified how a condition should be defined, diagnosed, and treated. And I understand the wariness of some doctors. But “do no harm” does not mean do nothing.
There are a couple of other troubling things about this story. One is that we have seen a similar tale play out before. Chronic Fatigue Syndrome, or ME, was once dismissed as a psychiatric condition. It isn’t. And although it is not known what causes it, many of the theories involve some sort of post-infection chronic condition.
Going back further to the 19th century, the late-stage form of the sexually transmitted disease syphilis was thought of as a degenerative mental illness by psychiatry. It was widely supposed to be due to bad heredity, weak character or moral turpitude. By 1913, when a bacteriologist found traces of the bacterium responsible in the brains of the deceased as many as one-third of patients in mental hospitals had symptoms that could be traced back to syphilis.
There has been a long separation of neurology and psychiatry. As science advances and identifies more direct causes of mental illness, psychiatry seems ill-equipped to identify patients who need more than therapy.
Notes
I will post news updates here.
The Daily Mail publishes a follow-up feature on Britain’s recognition of PANS PANDAS.