Most in the UK will remember March 2020 as the month the Covid-19 coronavirus began ripping through the population. It was the start in earnest of a pandemic that the Conservative government catastrophically mismanaged, leaving a harrowing trail of deaths in its wake. The end of that month marked the implementation of pandemic protections, with the first ‘lockdown’. For the parents of one child however, there was another world-shattering event that turned their lives heartbreakingly upside down – and still is to this day. That’s because, in March 2020, their lives were put on hold, when their nine year-old son Oliver suddenly presented with a cluster of devastating symptoms quite literally overnight The probable cause was one of a pair of under-recognised neuropsychiatric conditions called Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Pediatric Acute-onset Neuropsychiatric Syndrome (PANDAS).

However, it was a year before he got the diagnosis for this.

The Canary spoke to Oliver’s dad Ben about his son’s ongoing battles – five years on – living with PANS/PANDAS.

And crucially, Oliver’s story is just one of many. This is because it’s estimated that as many as 1 in 200 children live with these conditions – though the true prevalence isn’t known. However, his tale typifies the current situation in the UK for children with PANS/PANDAS. And in an uncanny resemblance to the experiences of other patients living with similarly trivialised conditions, it’s largely one of stigma, medical ignorance, and neglect.

What is PANS/PANDAS?

PANS and PANDAS are a pair of neuropsychiatric autoimmune conditions – most commonly in prepubescent children – characterised by the dramatic sudden onset of a series of physical and mental health problems.

To diagnose PANS, patients must present with rapid onset – often within 24-48 hours – of obsessive compulsive disorder (OCD) or severely restricted food intake. Alongside this, they must exhibit two or more of the following symptoms:

• Forms of anxiety
• Tics
• Rapid, uncontrollable mood changes (known as emotional lability)
• Depression
• Motor or sensory problems (such as dygraphia and sensitivities to light, noise, smell, taste, or texture)
• Behavioural/developmental regression
• Enuresis (bed-wetting) or urinary frequency
• Insomnia and/or sleep disturbances
• Sudden deterioration in school including difficulties with memory, concentration, hyperactivity, and impulsivity.
• Irritability, aggression, and severely oppositional behaviours

PANDAS is similar, but only requires sudden OCD or tics for diagnosis. While PANS can be diagnosed in people of any age, PANDAS is strictly in children between the ages of three and puberty.

Approximately a quarter of children diagnosed with PANS/PANDAS have also experienced psychosis and/or hallucinations.

Currently, medical science does not fully understand the exact cause or mechanism involved in PANS/PANDAS. However, researchers have identified some potential factors revolving around autoimmune dysfunction.

Various viral and bacterial infections, including (but not limited to) Lyme disease, influenza, Epstein-Barr, and mycoplasma bacteria can all trigger PANS. New studies suggest Covid-19 is also another possible cause. Meanwhile, in PANDAS, it’s a Group A Streptococcal (GAS) infection – commonly referred to as strep – that instigates it.

Specifically, these infections cause a misdirected immune response, where antibodies mistakenly attack cells in the basal ganglia region of the brain. It’s why some researchers consider both conditions to be a form of autoimmune encephalomyelitis (AE). Since the basal ganglia plays a role in motor control, emotional processing, language, decision-making, and habit formation, the symptoms of PANS/PANDAS would track with this.

Meet Oliver: a young teenager who lives with PANS/PANDAS

Ben shared with the Canary some of his fondest moments with his son. It was “impossible” to give just one because Ben said:

He had a sense of humour, fun, mischief and confidence that amazed me every day.

He described a standout adventure they’d had together:

Me and him would often do boys trip days out and we had one where we went exploring in the Peak District and visited Thor’s Cave – that was a special day from which I have many beautiful memories and photos.

However, in the last five years, Ben has been able to make no new memories like this with him. That’s because, Oliver, who had once “lit up every room” suddenly stopped eating, sleeping, and drinking, all in the course of just one weekend that March. His son, who’d been the “most vibrant child it was possible to imagine” was suddenly writing in his diary daily that he wanted to die.

He started developing obsessive compulsive rituals, and extreme phobias of water, and items being taken away or cleaned. Alongside this, Oliver also began experiencing severe sensory issues. He described how his skin felt “on fire” and would need the fan on, and his windows open, even during winter. It meant he could no longer tolerate the sensation of clothes touching his skin.

As a result of sudden food and water restriction, he eventually ended up in A&E. Ben explained how:

Oliver changed very suddenly in March 2020. Within a weekend, he stopped eating, sleeping and drinking. We took him to A&E where he was admitted and spent about ten days. He spent his time there incredibly distressed and moved around the childrens’ ward almost like a wild animal, not letting people see him or engage him whenever he could avoid it. He hid food in lots of secret places that only he knew about and was constantly anguished. He refused to wear clothes and shoes, apart from a single pair of boxer shorts which he never took off.

Stumbling across PANS PANDAS: the ‘lightbulb moment’

However, medical professionals didn’t immediately give Oliver his PANS/PANDAS diagnosis. Initially, he was referred to Child and Adolescent Mental Health Services (CAMHS):

We were told only that he was Autistic and had a suspected Autistic breakdown. This made no sense to us, because before all of these sudden changes, he was a completely normal child in every way. This was aged nine. We spent some months working with CAMHS and had a great psychiatrist who continued to say he felt Oliver was high functioning Autistic and had had an Autistic breakdown.

It took Oliver’s mum researching and stumbling across the condition online before his medical team began exploring it as a possible explanation for Oliver’s drastic change. Ben detailed the subsequent sequence of events that eventually resulted in his diagnosis:

Oliver’s Mom read about PANS PANDAS in November 2020 and it was an immediate light bulb moment. We pursued this, helped and supported by his CAMHS psychiatrist until he was given a probable PANS PANDAS diagnosis in writing from a specialist children’s hospital in March 2021.

Not a rare condition – underdiagnosed and missed by medical professionals

Why did clinicians miss it? In big part, it’s because most haven’t even heard of it.

The PANDAS diagnosis has been knocking around since 1998. This was when paediatrician Susan Swedo first proposed streptococcal infections as the possible trigger for the sudden acute onset of these neurological and psychiatric symptoms in children.

However, over a quarter of a decade later, according to PANS PANDAS UK (PPUK) – the foremost charity raising awareness and advocating for patients with these conditions in the UK – as few as 10% of NHS doctors know of the condition.

PANS came later, in 2012, again by Swedo and her colleagues. Once more, the majority of medical professionals are unaware of it. In a 2020 PANS PANDAS UK survey, 95% of parents said their doctors didn’t put either forward as a possible diagnosis for their children.

Largely, like many medically misunderstood and under-recognised conditions, this comes down to a combination of starkly underfunded research into them, and a culture of dismissal due to a lack of clinical consensus.

The Canary has written about multiple conditions like this where the story is only too disconcertingly similar. Myalgic encephalomyelitis (ME) is likely the most prominent example where all this applies.

One of the major issues for ME patients has been around years of persisting inadequate, medically harmful clinical guidelines. Notably, in 2021, the National Institute for Health and Care Excellence (NICE) updated its ME guidelines to remove and downgrade two treatments dangerous to patients that lacked an empirical basis. Clinicians have continued abusing patients regardless – not least because the guidelines are non-mandatory. However, more than this, a lack of clinical guidelines for co-occurring conditions has left patients dangerously under-served by the healthcare system more broadly.

PANS/PANDAS patients are in this position – since no formal clinical guidelines of any form currently exist. PPUK chair Vicky Burford spoke to the Canary. She argued that that the lack of guidelines made it “challenging” for healthcare professionals, because it meant they’d have:

no training in the conditions and no UK guideline to inform and steer their decision making.

No guidelines, no training, not good enough

Currently, there’s not sufficient high quality evidence to produce NICE guidelines. However, PPUK’s steering group is working to make robust guidelines happen nonetheless. It is collaborating with NHS England, with the support of the Royal College of Paediatrics and Child Health Clinical Guidelines and Standards Team to create these.

And crucially, patients with lived experience and parents or carers of children with these conditions are at the heart of developing these. Alongside independent experts from multiple medical disciplines, and PPUK, they all have representation in the Guideline Development Group (GDG) leading this.

Burford also explained that:

Until very recently, there was no CPD-accredited training for healthcare professionals to learn about the conditions. This means that GPs are unlikely to be in a position to consider PANS and PANDAS if a patient presents reporting sudden changes following infection.

However, Burford acknowledged that getting a guideline in place is only really the first step. Clinicians actually following them will be another matter altogether. And notably, the failure of NICE guidelines in changing the healthcare situation for ME patients could serve as a cautionary tale on this. This is because there are other uncomfortable parallels with PANS and PANDAS.

Disbelief and stigma

Disbelief, trivialisation, and incorrect treatments driven by denial of a physiological basis are all familiar to ME, Ehler’s Danlos syndromes (EDS), and patients of similarly under-recognised chronic health conditions. Unfortunately, you could switch out the experience of people living with any of these diseases or conditions with PANS/PANDAS and find an alarmingly uncanny tale.

Oliver and his parents experienced this firsthand from some clinicians overseeing his care:

100% there is a stigma. This is largely through fear caused by there being no NHS clinical guidelines and no definitive assessment criteria for the condition. However, we have also experienced personal prejudice from professionals who have simply told us that this doesn’t exist.

And as parallels go, there were more unfortunate resemblances with ME and other chronic illness patients in the resulting attitude of doctors. That is, medical and educational professionals would regularly deny its existence altogether. He explained how initially, a lack of awareness had been the main issue. However, after that came the denial:

More recently, more people are aware, but either choose to say it’s not real, or hide behind the lack of NHS diagnostic criteria or treatment protocols.

This gaslighting sometimes extended to accusations against Oliver’s parents that seemed to suggest they were the reason he wasn’t getting better:

We’ve repeatedly been asked “why are you concerned about your child having Autism” as if we are the problem.

Parents get the blame

For some parents, this culture of blame has also translated into something even more sinister. Medical professionals, social services, and others involved in child care and education have levied safeguarding referrals against them. In some instances, they have accused parents of children with PANS or PANDAS of Fabricated and Induced Illness (FII).

In a nutshell, this is where parents are purportedly claiming a child has ill health or disability, and the medical evidence doesn’t match up. The obvious implication is that it’s parents’ fault their child is experiencing symptoms.

A PPUK survey from 2022 found that one in five parents of 217 children with PANS or PANDAS symptoms had been accused of FII or safeguarding concerns. However, as the group has noted, there’s also little evidence for the phenomenon’s prevalence. Simply put, on the whole, parents aren’t doing this. Nonetheless, it hasn’t stopped clinicians and others accusing them of it.

PPUK’s Burford told the Canary how these accusations were often “as a direct result of” parents’ efforts to access health provision or support in the education system for their children. What’s more, she explained how these referrals would in fact:

act as an additional barrier to accessing treatment and support, with reports of medications which are working being withdrawn abruptly all too common.

Burford expressed how all this adds “layers of trauma” for parents and carers of children with PANS or PANDAS.

Too ready to psychologise, less ready to investigate underlying causes

Instead then, far from Ben and other parents being the “problem”, if there’s one anywhere, it’s in a medical culture quick to psychologise, less prepared to investigate underlying physiological triggers. Ben explained that with Oliver’s clinical professionals:

Some have been unable to comprehend that a child showing “mental” health symptoms could have anything to do with a physical / organic cause within the body.

To me this seems crazy, my own Mom is elderly and gets repeated UTIs. When she has an active infection she frequently becomes delirious, confused and sees things that are not there. It’s accepted in the elderly that an organic cause can contribute to psychiatric symptoms, but not in kids.

In fact, doctors have weaponised a certain controversial diagnosis against PANS PANDAS patients in an alarming number of cases. This is the notorious functional neurological disorder (FND). Again, it’s another experience people in other chronic illness communities like ME and EDS know only too well. And it has a problematic past.

FND is the contemporary terminology for ‘conversion disorder’ – itself a reinvention of hysteria of historic medical misogyny infamy. Disgracefully, the archaic origins in Greek mythology haven’t stopped its sexist stigma from enduring. As it stands today, clinicians will affix the label FND to patients with neurological symptoms when they can’t identify it with proven pathophysiological causes and known neurological conditions.

Invariably then, some have also applied it to patients with ME, EDS, and other conditions to dismiss the biological basis of their illness. In promulgating a psychogenic origin, it has enabled a prominent biopsychosocial lobby to continue pushing controversial psychiatric treatments on patients.

Unsurprisingly, it’s been the case with PANS and PANDAS too. Health journalist Natasha Loder has written on this very situation for children in the UK:

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”.

FND, Sydenham’s Chorea, and PANS/PANDAS

On the most basic level, FND is the crystallisation of centuries of clinicians psychologising away clusters of symptoms they don’t understand.

And there’s a particular historical irony with PANS/PANDAS in the context of FND as well.

This revolves around 17th century British physician Thomas Sydenham. While still partly fixated on psychological causes, he was one of the first physicians to put forward that there were physiological factors at play in so-called hysteria.

Where does he come into the history of PANS and PANDAS? Enter ‘Sydenham’s Chorea’. It’s a neurological autoimmune disorder also brought on by Strep A infections, as well as severe cases of rheumatic fever. First described by Sydenham in 1686, it was later named for him.

More than three centuries on, it was her work into Sydenham’s Chorea that led paediatrician Susan Swedo to propose PANDAS as a new diagnosis.

Yet, here we are a quarter of the way into the 21st century, and doctors are still writing off the physiological etiology of symptoms in conditions like PANS/PANDAS.

Prescribing antipsychotic medication with alarming ‘side effects’

Fortunately, in Oliver’s case, doctors didn’t give him an FND diagnosis. Nevertheless, they did quickly initially jump to psychiatric interventions.

Ben explained to the Canary that after attributing his sudden symptom onset to an Autistic breakdown, they prescribed him antipsychotic medication. For 13 months, doctors gave nine year-old Oliver medication like Risperidone, alongside the antidepressant Fluoxetine. However, Ben recalled how he and Oliver’s mum had had to sign parental waivers.

NICE licenses Risperidone for use in Autistic children exhibiting severe aggression. However, while doctors can only prescribe it for a maximum of six weeks in adults with severe aggression, this cut-off somehow doesn’t apply to children. They can use it to treat them for longer than this – and in some cases, do so for years.

The British Psychological Society (BPS) raised concern over this in 2020. First, it underscored the dizzying array of “very alarming” so-called side effects – in essence really, symptoms – that the drug causes. For children, NICE lists that this includes:

Agitation; amenorrhoea; arrhythmias; constipation; dizziness; drowsiness; dry mouth; erectile dysfunction; fatigue; galactorrhoea; gynaecomastia; hyperglycaemia; hyperprolactinaemia; hypersalivation; hypotension (dose-related); insomnia; leucopenia; movement disorders; muscle rigidity; neutropenia; parkinsonism; postural hypotension (dose-related); QT interval prolongation; rash; seizure; tremor; urinary retention; vomiting; weight increased

And notably, the BPS also highlighted how the drug had been the subject of two “landmark” legal rulings in the US, alongside thousands of class actions. The most significant was a 2019 case that became one of the largest ‘punitive settlements’ in US history. Crucially, a judge and jury imposed a $8bn (later reduced to $6.8m) fine on the manufacturer of Risperidone because it:

had not made the probability of these potential serious side effects in children clear to the public / parents in their advertising literature

Together, clinicians have labelled this cluster of health problems Metabolic syndrome – which puts people at risk of Type 2 Diabetes and various heart conditions.

Overuse of ‘major tranquillisers’ in children

The BPS concluded that:

the widespread use of risperidone in the vulnerable child population in the U.K. is a major safeguarding Issue which needs addressing and that in some shared cases it can be demonstrated that more physical and psychological harm has been done compared to any benefits for the child by the use of such medications.

Ultimately, antipsychotics like Risperidone are also known as “major tranquillisers” for a reason. While they might be appropriate in some cases, it should raise red flags that medical professionals seem to be increasingly prescribing them to children. A study by the University of Manchester found that between 2000 and 2019, the proportion of children prescribed them had doubled.

But, like Oliver, there’s a very real chance that a misdiagnosis may lead to many of these children getting it wrongly prescribed. Ben detailed that he regretted agreeing to the medication, but that:

he was so ill and distressed we felt we had no choice.

Since medical professionals were presenting them with no other options, it’s little wonder Oliver’s parents went with their advice. Yet, Ben explained that:

Once he received a PP diagnosis after 13 months, he started to receive the right meds ie. simple antibiotics and anti-inflammatories, with occasional steroid bursts.

On each occasion, on the right meds, he improved a lot, but never close to his starting point pre the change.

However, the misuse and abuse through psychiatric care didn’t end there. Notably, a problematic consensus statement from the British Paediatric Neurological Association (BPNA) came in to muddy the waters over the science on the conditions’ physiological causes. Naturally, it promoted psychiatric medications and treatment – as clinicians had with Oliver. At the same time, it rejected the immune-modulatory treatments like steroids, anti-inflammatories, and antibiotics that had been found to help children with PANS and PANDAS, citing a lack of sufficient scientific evidence.

PPUK contested this. The group lambasted the statement, relaying how it had a “detrimental impact” on families, including resulting in an increase in FII accusations against them. Crucially, it noted how it cherry-picked and misinterpreted studies to emphasise psychiatric interventions:

The statement is not peer reviewed or medically published. Most concerning, in our opinion, is that the BPNA statement contains a number of errors, inaccuracies and omissions…The statement also omits a vast body of published peer-reviewed medical literature on PANS and PANDAS.

Sectioning under the Mental Health Act: all too common for PANS PANDAS too

Needless to say, Oliver was also caught up in its psychologising ramifications. Ben detailed that:

on admission in May 22 all of his meds were stopped even though we provided detailed testimony they were helping. He wasn’t even allowed Calpol, which did have a mild beneficial effect on him. This caused a severe crash resulting in him refusing food, a bed, any bedding for 10 days. He lived on the floor of a hospital room for 10 days like this – wouldn’t let me or his Mom into the room and was in extreme distress the whole time.

At this point, they also threatened to section Oliver under the Mental Health Act 1983 (MHA). However, Ben said that Oliver:

was terrified by this, so agreed to start to eat again so he could come home.

Nonetheless, his hospital stay took its tragic toll on Oliver:

As a result of the trauma he experienced here, he has remained totally unable now for nearly 3 years to take any meds, or engage with services in any way. Bar his Mom and Sister, nobody has seen him for 3 years as he won’t leave the house, won’t allow anyone to see him. I haven’t seen him in all this time as he is always hidden under a blanket.

Unfortunately, but perhaps predictably, healthcare teams have sectioned other children with PANS and PANDAS under the MHA. Burford explained that there’s no current data on this, but that PPUK:

do often hear from families that this has been their experience prior to having heard of PANS and PANDAS.

She explained the reason for this was that:

Again, low levels of awareness that there could potentially be an organic or infectious trigger for the acute-onset of neuropsychiatric symptoms mean that many people will receive an inaccurate diagnosis. This, in turn, means that patients are likely only to be offered treatment for mental health conditions which will not, on their own, address PANS and PANDAS. These patients may then ‘fail’ to respond to these standard psychiatric treatments or therapies, thereby potentially causing symptoms to worsen or become chronic.

Timely diagnoses can make all the difference

Heartbreakingly, Ben feels like his son could have avoided these long years with PANS PANDAS had he received an earlier diagnosis:

He’s now lost 5 years of his life. Not seen any school friends, sports club friends or family bar Mom & Sister for 5 years. He will have no experiences to look back on between 9 & nearly 15 other than ones of isolation. He hasn’t seen anything apart from the 4 walls of his Mom’s house – not walked on the grass or felt the warmth of the sun. All of this could and should have been avoided if awareness and simple initial treatment plans were in place. Everyone who works with kids in any capacity should be taught about it.

And that’s the thing with PANS PANDAS. If clinicians catch it early enough and treat it with the correct medication – mostly a long course of antibiotics, anti-inflammatories, or steroids – children can radically improve or even recover entirely. Of course, it makes the fact that medical professionals initially misdiagnosed him, gave him antipsychotic medications, and withheld the antibiotic and steroid medication that was helping him, all the more appalling.

Additionally, Burford pointed out that long waiting lists for CAMHS has also compounded the problem of huge delays in diagnosis:

As many of the symptoms of the conditions overlap with mental health conditions and neurodivergence, it is not uncommon for GPs to make a referral to Child and Adolescent Mental Health Services (CAMHS) without considering if there could be a medical cause for symptoms.

Long waiting lists for CAMHS mean that families are left in limbo for months and even years trying to manage multiple, severe symptoms without support or an explanation which seems to fit their experience. By the time they are assessed by CAMHS, any consideration of a temporal link to infection is unlikely.

Of course, Oliver’s diagnosis troubles are not uncommon among PANS and PANDAS patients. It underscores the unconscionable impact of the stigma that pervades these conditions, and prevents children from getting timely diagnoses in the first place – and vitally, the right help they need from there.

‘The Boy Who Stopped’

Ben has given his son’s story a heartbreaking title: “The Boy Who Stopped”. It’s because so many parts of Oliver’s life went on pause when PANS PANDAS hit. School, his martial arts, and hobbies all abruptly put on hold. Oliver can’t talk to people, wash, dress, clean his teeth, be in the same room as others, or leave the house.

This was all the effect of his PANDAS. However, it was the traumatising care he received that has kept him trapped this way. Now, five years to the month it struck – this is all tragically still the case for Oliver. And in that time, Ben – who’s been separated from Oliver’s mother since their son was four, so doesn’t live with them – has been entirely unable to see him.

And he’s not the only one. Apart from his mum and sister, PANS PANDAS has completely isolated Oliver from his friends and family. Ben spelled out the harrowing cost of this to his son, and his loved ones:

Members of his family have died and are ill – grandparents, uncles etc and his grandma is currently very ill and distressed that she may not be able to see him again.

If he is approached directly by anyone, he will run away, escape and lock himself away. If we were to get any closer, he has a severe and distressing panic attack, so for years now we have all decided not to push him and upset his status quo.

Now, Ben writes the things he wants to tell his son on his X account ‘Notes to my boy‘. There, he tells Oliver’s story to raise awareness of the devastating conditions, fight the medical ignorance, and ultimately, to get his son back. More than this, Ben’s bravely shares it to help other parents find the right diagnosis for their children – with the hope that in their case – it’s in time to make a difference.

Featured image supplied

By Hannah Sharland

This post was originally published on Canary.