Two years ago Fleur Senior, then 14, was considered by her teachers to be on course to read maths at Oxford University. A bright child, she was also the fun-loving lynchpin of a gaggle of girls at school. She loved playing hockey and tennis, as well as practising on her trombone and the piano.
The only cloud on Fleur’s horizon was a recurrent problem with glandular fever. Four bouts over two years had drained some of her bountiful energy. Blood tests by a paediatrician had found evidence of a series of infections with the Epstein-Barr (EB) virus, a member of the herpes family that causes glandular fever.
But it was another viral infection that was to have a devastating effect – leading to serious neuro-psychiatric problems such as hallucinations and self-harming, says her mother Helen, 56, a finance director and married mother of two.
Fleur, now 16, hasn’t been able to return to school full-time since.
In January 2022, Fleur, from Banstead, Surrey, contracted Covid-19.
‘Just before she tested positive for the virus, she started doing these extraordinary movements such as twitching and flailing, along with extreme verbal outbursts that included some terrible obscenities,’ Helen told Good Health.
‘We [my husband, David, and I] wondered what on earth was going on. It was so out of character.’
A month after the sudden outbreak of physical and verbal symptoms, Fleur saw a psychiatrist who told the family she suspected Fleur had PANS – Paediatric Acute-onset Neuropsychiatric Syndrome. ‘We had never heard of it,’ says Helen.
PANS is thought to be caused by the body’s immune system over-reacting to a viral infection. It then attacks cells in the brain, causing major inflammation. The symptoms often involve a sudden outbreak of verbal and physical tics, as well as mental-health problems such as obsessive-compulsive disorder – where people have recurring, unwanted thoughts, ideas or sensations and feel driven to repeat activities ritually to keep these obsessions under control.
A subset of PANS, PANDAS – Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections – is specifically linked to infection by Group A Streptococcus bacteria, which is very common, causing conditions such as sore throats, impetigo, and scarlet fever.
Something similar is known to happen with adults, where infections such as herpes can cause brain inflammation called encephalitis which in turn can cause psychotic symptoms such as hallucinations and self-harming (even simple urinary tract infections can lead to cognitive problems such as confusion in older patients – more below).
PANS and PANDAS were first reported 25 years ago by researchers at the U.S. National Institute of Mental Health in the American Journal of Psychiatry. The World Health Organisation first acknowledged the conditions’ existence in 2018.
However, the existence of these conditions has been controversial – indeed the NHS website has no information on either – and they have only been officially recognised by the Government in the UK in the past couple of months.
Fortunately for Fleur, the psychiatrist knew about the condition and quickly recognised it. After their appointment, Helen tracked down the PANS/PANDAS UK charity community page on Facebook, where she learned more about how the family might help Fleur.
‘We were fortunate in that our Bupa family health insurance paid for us to see a private consultant immunologist who is a leading expert in PANS in the UK,’ says Helen. ‘It’s a phenomenally costly business, involving batteries of expensive blood tests.
‘From the diagnostic evidence such as blood tests, it seems that when Fleur caught Covid, her body’s immune-system response was already dysregulated due to the Epstein-Barr virus,’ Helen continues. ‘Her immune response to catching Covid involved a seriously damaging immune over-reaction that started to attack her brain.
‘But if you go to the NHS they will most likely tell you that neither PANS nor PANDAS exists, and that your child has either a psychiatric disorder or autism,’ she says.
‘If it’s the former, they will put your child on powerful psychiatric medicines and leave them on the end of a years-long waiting list for a consultation with NHS child and adolescent mental health services.’
Yet in the majority of cases, a simple, two-week course of antibiotics will treat the body’s response to the infection, and resolve the PANS/PANDAS symptoms significantly, or completely. Some children may also need anti-inflammatories such as ibuprofen or steroids.
Recovery can be extraordinary, says Dr Tim Ubhi, an NHS consultant paediatrician at Darlington Memorial Hospital, where he runs one of few clinics treating children with PANS and PANDAS.
‘You see a huge improvement – we have patients who’ve had symptoms for years who recover,’ adds Dr Ubhi, one of a group of specialists behind the UK Pans Pandas Physicians Network, set up in 2018 to help raise awareness of the conditions.
The first step must be a thorough investigation to rule out other causes, he adds.
And delay in diagnosis – and treatment – can be significant. Helen says: ‘Experts have told me it takes double the time to cure the condition as the time that elapsed between onset and appropriate treatment.’
By the time Fleur’s diagnosis was confirmed in July 2022, her condition had deteriorated so badly that she was self-harming, suffering psychedelic-like hallucinations up to nine times a day and occasionally becoming mute.
‘Every so often her legs would just stop working. I could not leave her physically alone because she would panic,’ says Helen.
Despite families such as Helen’s seeing neuro-psychiatric symptoms develop literally overnight in previously well children, many of those affected have been told by mainstream medical authorities that the symptoms are entirely psychological — or are dismissed as driven by parental hysteria or even abuse.
In a 2020 survey for the charity PANS/PANDAS UK, 95 per cent of parents whose children suffered these kinds of symptoms said that their family doctors had not offered the diagnosis.
Things were little better among specialists. Around half of the paediatricians surveyed said they had never heard of the disease.
‘We know of children being taken away from their parents because of allegations of abuse because of the behaviour of their child,’ says Robin Millar, Conservative MP for Aberconwy, who chairs the All-Party Parliamentary Group on PANS and PANDAS.
‘Another fundamental problem is that this clinical condition is often wrongly misdiagnosed as a mental health issue, which is worse than having no diagnosis at all,’ he told Good Health. Mr Millar has been campaigning in parliament to get the condition officially recognised by the UK’s medical authorities, to pave the way for better diagnosis and treatment.
He’d previously been alerted to the conditions by a mother in his constituency seeking medical help for her young teenage son.
‘She showed me videos of him showing extraordinary distress, shouting and scratching himself. I could see the pain and emotional impact on her.’
In September, he won a crucial breakthrough when, in response to his parliamentary questions, the then health minister Maria Caulfield declared: ‘We have the evidence to sufficiently demonstrate that PANS and PANDAS are discrete disease entities’. In other words, recognising them as bona fide individual medical conditions.
Says Mr Millar: ‘This really was a seminal moment. For the first time a government minister has acknowledged that these conditions exist. The key point is getting it recognised as a condition that can be treated effectively in many cases.’
Mr Millar is campaigning for government funding to study a large cohort of children with the conditions. ‘The fact that the vast majority of doctors don’t recognise these conditions would change if they were recognised in a reputable journal. It could also help to guide them about treatments.’ Vicky Burford, who set up the charity PANS/PANDAS UK in 2018 after her son, then 12, was affected, said while Maria Caulfield’s announcement was ‘hugely welcome’ and that it feels like the tide is turning — ‘it’s not turning fast enough,’ she says.
‘We have 6,000 people in our Facebook support group, all people looking for answers after their children suddenly developed unusual symptoms that medics can’t seem to treat.’
And she warns: ‘A lot of the symptoms, such as rage, self-harm and bedwetting can be seen as red flags that will make a professional think there’s possible abuse in the home, rather than thinking it might be PANS or PANDAS.’
‘If you don’t get a practitioner who’s knowledgeable about the condition, you don’t get diagnosed. But in the UK colleges there is no training for this diagnosis,’ she explains.
‘NHS England told us that it was taught by the Royal College of Paediatricians, but it is only a one-line mention in course material that PANS/PANDAS is potentially an alternative cause of tics in children.’
But awareness has improved in the last five years, says Dr Ubhi, who is clinical director of the Children’s e-Hospital, a private online health service.
Previous surveys suggested as many as 90 per cent of GPs had not heard of either condition, but he says more doctors are now referring patients for treatment.
Meanwhile, around the world researchers are trying to pin down the biological mechanisms behind PANS and PANDAS, to understand how it develops and to perfect new therapies.
The consensus is that the trigger is a viral or bacterial infection causing the immune system to overreact and attack brain cells. In a study published in the journal Brain, Behavior, and Immunity in 2018, researchers at Yale University and the U.S. National Institute of Mental Health extracted antibodies from the blood of children with PANDAS and injected them into laboratory mice — they found that the antibodies attacked neurons in parts of the brain associated with controlling physical movement and that are linked with tic disorders.
Now in the U.S. and Sweden, the drug company Octapharma is conducting clinical trials of a type of antibody called immunoglobulin. This is being given intravenously in the hope that it will displace the brain-damaging antibodies and stop the inflammatory processes.
In fact, the idea that infections can seriously affect people psychologically is not new.
As the Mail’s GP columnist, Dr Martin Scurr explains, this is a recognised effect of urinary tract (UTI) infections in older patients – ‘when quite suddenly and unaccountably a patient becomes confused or merely bad-tempered and uncooperative’.
‘While you first must check to exclude a stroke or a cardiac event, more often than not a urinary infection is the common cause of this change in older patients,’ he says, adding: ‘I recall quite vividly being called to see a retired colleague, in his late 80s, one warm Sunday evening after he’d gone missing for some hours.
‘He was eventually brought home by the police who’d found him only a mile or two from home, parked up in a state of some confusion. He had a urinary infection and two days after starting on antibiotics, he was fully recovered.’
Recent research suggests that UTI-related confusion may be linked to raised levels of an inflammatory protein that’s part of the immune system – and that this may attack brain cells.
Separately, the idea of a patient’s own antibodies attacking their brain after a viral infection is already established in a type of encephalitis (brain inflammation) that affects adults after a viral infection such as herpes. It can cause severe psychosis that, again, may manifest as hallucinations and self-harming.
Belinda Lennox, a professor of psychiatry at Oxford University, has spent more than a decade pioneering treatment for post-viral encephalitis, and in particular a form called anti-NMDA receptor encephalitis, an autoimmune disease identified in 2007.
This type of sudden-onset encephalitis is caused by people’s own immune systems attacking message-receiving cells in their brains called NMDA receptors, Professor Lennox told Good Health. ‘These receptors regulate fundamental brain functions,’ she explains.
‘It seems that patients’ immune systems are mistakenly driven to attack these NMDA receptors when they respond to certain viral infections such as herpes simplex, which may look similar to the NMDA receptor.’
Over the past ten years, her clinical team has been able to cure post-viral encephalitis patients of their terrifying psychiatric symptoms, by treating them with drugs such as steroids that suppress the immune system over-reactions.
However, she says, her results have failed to impress the mainstream medical world, even though her team has published individual case reports of positive results with 30 patients.
So now she has embarked on a ‘gold-standard’ randomised clinical trial in people with sudden-onset psychosis.
‘We are giving them intravenous immunoglobulin [as is being trialled with PANS], and also rituxamab, a drug used in another autoimmune disease, rheumatoid arthritis.’
‘Almost everyone we’ve given the treatment to gets better, though some people’s bodies aren’t able to tolerate it,’ she says.
A similar approach is taken by Dr Thomas Pollak, a neuropsychiatrist and senior clinical lecturer at the Institute of Psychiatry, Psychology and Neuroscience at King’s College London. He runs a clinic for people with suspected autoimmune encephalitis and other autoimmune brain conditions that can present with psychiatric symptoms.
‘We see about 50 patients a year — people who have had acute onset of psychosis, severe depression, mania, extreme anxiety disorders,’ he told Good Health. ‘They’ve been given psychiatric diagnoses and treated accordingly.
‘About half of patients with anti-NMDA receptor encephalitis have been admitted to psychiatric wards and often also been sectioned and treated with strong anti-psychotic drugs.’
‘They are sent to us generally only if an enthusiastic junior doctor looks into their case, or if the patient subsequently develops more neurological symptoms that strike their teams as abnormal,’ he adds.
‘But we don’t know how many cases we might be missing – people who are languishing in psychiatric units or being on strong and inappropriate medication in the community, when it might be more appropriate to give them immune-modulating drugs,’ says Dr Pollak.
Fortunately for Fleur Senior, with the right help there have been significant improvements in her condition.
‘If I’d not got the diagnosis of PANS, I’ve no idea what we would have done, other than allow Fleur to be put on powerful, but useless, anti-psychotic drugs,’ Helen says. ‘Instead, the PANS specialists are aiming to stop the autoimmune attack and the resulting inflammation.’
Fleur is taking a cocktail of medications that includes the anti-inflammatory drug naproxen (usually given for swelling and pain), azithromycin (a powerful antibiotic with anti- inflammatory properties), melatonin (a hormone that regulates sleep), and an anti-anxiety drug aripiprazole.
‘We have seen crucial improvements. She does still tic a bit, but nothing like before,’ says Helen. ‘Her fatigue levels are much better, so she can now do activities such as pottery and she sleeps through the night — at her worst the anxiety and stress were so bad she wouldn’t sleep until 4am and I’d have to stay with her.’
‘That said, she’s still a shadow of her former self. It’s all been so bleak and scary for her, at a time of her life when she should be feeling her most free.
‘Since all this started she’s been unable to go to school in any meaningful way. Fortunately she remains cognitively fine.’
Worst of all, says Helen, is the thought that, ‘if Fleur had been diagnosed and treated promptly, she might have been fine within weeks. It’s soul-destroying to think about that.
‘There’s a whole shift in medical thinking needed, to appreciate the damage that the immune system can do to the brain.’
Professor Lennox agrees. For adults, she says, ‘I want to see antibody testing become routine across the NHS,’ she says. ‘It should be part of basic medical thinking when someone presents with a new sudden-onset post-viral mental illness that does not get better with standard treatment, such as antipsychotics.’
- For information and support on PANS or PANDAS go to panspandasuk.org
Sarah Carter is a health and wellness expert residing in the UK. With a background in healthcare, she offers evidence-based advice on fitness, nutrition, and mental well-being, promoting healthier living for readers.
