Best Practice

PANS and PANDAS: Supporting affected pupils

Pupil wellbeing Attendance Pastoral issues SEND SENCOs
Infections can cause the development of psychiatric and physical symptoms in children and young people. Tina Coope discusses PANS and PANDAS and the implications for teaching and learning
Growing understanding: Young people with PANS and PANDAS often develop SEND without any prior evidence of need, significantly struggle to attend school, and the conditions can frequently be misdiagnosed - Adobe Stock

Awareness of the post-infectious conditions of PANS and PANDAS is growing. This medical condition is affecting thousands of children and young people, often puzzling and dividing both families and professionals alike.

Children and young people with PANS and PANDAS often develop SEND without any prior evidence of need, significantly struggle to attend school, and the conditions can frequently be misdiagnosed as a purely mental health condition.

 

What are PANS or PANDAS?

PANS stands for paediatric acute-onset neuropsychiatric syndrome, while PANDAS stands for paediatric auto-immune neuropsychiatric disorder associated with streptococcal infections.

PANS and PANDAS are post-infectious autoimmune and neuro-inflammatory conditions that impact both physical and mental health.

They are triggered by common infections like “strep throat”, chicken pox, or influenza, and require diagnosis by a medical professional.

While PANDAS predominantly affects children, with onset typically between the ages of 3 and 13, PANS symptoms can persist beyond age 16 and can also occur in adults, too.

Both conditions are known for their relapsing and remitting nature, with symptom exacerbations colloquially referred to as “flares”.

Historically perceived as controversial, the NHS now recognises both PANS and PANDAS, and multi-disciplinary professionals across psychiatry, neurology, immunology, social care, and education are actively working to support research, establish clinical guidelines, develop diagnostic pathways, and provide guidance for education, social care, and health professionals.

 

What might I see in the classroom?

Few conditions disrupt a child or young person’s experience in the classroom as quickly and profoundly as PANS and PANDAS. These conditions can cause children and young people to abruptly face severe challenges, including the onset of:

  • Obsessive thoughts and compulsions and/or tics.
  • Heightened anxiety, including separation anxiety.
  • Behavioural regression.
  • Restricted eating.
  • Eating difficulties.
  • Disrupted sleep patterns.
  • Sensory needs.
  • Disordered eating.
  • Developmental regression.
  • Deterioration in handwriting and executive functioning skills.
  • Toileting issues.

In some cases, children develop sudden, severe and complex SEND, requiring the system to respond with an uncommon level of flexibility to often misunderstood needs.

 

A puzzling phenomenon

The sudden onset SEND is puzzling to say the least – children and young people don’t typically just develop SEND out of the blue, and this does not align with many of the principles taught as part of initial teacher education and on-going training around neurodivergence and developmental conditions.

The abrupt onset of SEND, per se, is not new. While it may well result from severe trauma, injury, brain tumours or strokes, there is usually an identifiable cause that while also present is often not recognised or considered in the muddy waters of post-infectious conditions.

A “strep throat” infection a month ago in a seven-year-old child is not after all typically linked to the sudden onset of OCD, regression in handwriting, changes in executive functioning skills, and the onset of sensory needs.

Quite simply the dots cannot be joined if we are not aware that the dots co-exist.

 

Looking in the wrong place

When the narrative and story that a family are sharing about their child or young person doesn’t fit with common understanding and frameworks, a typical professional response is to shape it within much more familiar explanations and boundaries.

One of the (many) unusual characteristics of PANS and PANDAS can include a variable regression in skills. Rather than considering a medical explanation for skill regression, professional explanations and justifications often include that:

  • Quite simply no-one noticed before.
  • This is a mental health condition.
  • Your child has lost the ability to write and process instructions due to anxiety.
  • The demands of school have increased and therefore underlying difficulties have now been exposed.
  • Previous assessments were inaccurate and/or there is no direct comparative assessment.
  • Your child is autistic or has ADHD, dyslexia, dyspraxia, etc, and you didn’t notice the emerging signs.
  • Your child has a behaviour disorder.
  • This is due to trauma.
  • Your parenting is the cause.

 

A double burden

Not being aware of PANS and PANDAS creates a double burden: it significantly reduces a child’s likelihood of receiving an accurate diagnosis and timely treatment while at the same time leading to the misattribution of their symptoms.

This can result not only in the wrong support and provision but can contribute to longer term (and preventable) adverse outcomes for both education and health.

One child reported: “Horrible. I was in the top class for everything, but then suddenly my sentences weren’t making sense and equations were wrong.”

Their parent added: “When his writing and maths skills deteriorated, the school deemed him lazy, not trying and easily distracted.”

Families living with affected children and young people frequently report multiple and significant challenges including limited access to an NHS diagnosis and treatment, facing blame-focused narratives, the pressure to maintain school attendance for their acutely unwell child, and the ensuing trauma and exacerbation of untreated symptoms.

Meanwhile, professionals are increasingly encountering cases of sudden onset SEND and puzzling skill regressions.

Yet overall awareness of PANS and PANDAS remains limited – fewer than a handful of teacher training programmes cover these conditions, and they are conspicuous by their absence from current educational conversations and agendas.

Families and children typically ping pong around both the health and education systems, sometimes for years, with the child often gathering a constellation of neurodivergent or mental health diagnoses. For those children with pre-existing diagnoses or needs, it is even more challenging.

 

How common is this condition?

While undoubtably knowing the numbers of affected children and young people is crucial, it is a question to which there is currently no clear answer.

The charity PANS PANDAS UK is currently supporting around 7,000 families with the onset of neuropsychiatric symptoms in children and it would be naïve to think that this in any way reflects the scale of the issue.

The PANS PANDAS Steering Group – which was created in 2022 – recently submitted an application to the British Paediatric Surveillance Unit and Child and Adolescence Psychiatry Surveillance System for a UK-wide surveillance study. So hopefully we will soon know more.

 

Final thoughts

While we await much-needed NHS England and Royal College of Paediatric and Child Health clinical guidelines, there is more that we can do in our schools.

Simply by being aware that infections can cause the development of psychiatric and physical symptoms in children and young people, we can expand our perspectives about students who present with a puzzling regression in skills or sudden onset SEND and include post-infectious disorders as one variable to consider.

Tina Coope became the education lead at PANS PANDAS UK in 2021. She developed the UK's first teacher training on PANS and PANDAS and has created multiple professional resources. She is a former teacher. Visit https://panspandasuk.org 

 

Further reading & resources