Understanding PANS and PANDAS

When a child or young person develops PANS or PANDAS, it can be challenging and isolating.

For families, the situation is often frustratingly transparent; their child or young person caught an infection, physically recovered and then abruptly, and seemingly without any prior indication developed a scope of new, severe and eclectic wide-ranging needs ranging from obsessive thoughts to the onset of sensory needs.  

While the family’s journey may have begun with a typical virus or childhood illness, the consequences of the infection in the case of PANS or PANDAS are far from ordinary and can lead the child or young person on a completely unexpected path, one that for some, may last throughout childhood and beyond.

What are PANS and PANDAS

PANS – Paediatric Acute-onset Neuropsychiatric Syndrome  
PANDAS – Paediatric Autoimmune 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 can be triggered by common infections like strep throat, chickenpox, or influenza and require diagnosis by a medical professional. Whilst PANDAS predominantly affects children, with onset typically between the ages of 3 and 13, PANS can also occur in adults, and symptoms can persist beyond age 16.

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 multidisciplinary professionals across Psychiatry, Neurology, Immunology, Social Care and Education amongst others are actively working to support research, establish UK clinical guidelines, develop diagnostic pathways, and provide guidance for education, social care, and health professionals.

While the development of Royal College of Paediatrics and Child Health (RCPCH) accredited UK clinical guidelines will undoubtably be a significant step forward, this is realistically going to take some time. We also therefore need to consider what is happening on the ground to the children and young people in our classrooms today. Reports from families and young people unsurprisingly mirror the impacts of developing this disease in the current context, including a lack of clear parameters, awareness, training and guidance for families and professionals alike. 

Those families for whom private health care is viable may access a confirmed diagnosis and treatment, but for many other families, this remains elusive, and their untreated children and young people are trying their best to manage in education. Whilst support in education is needs rather than diagnosis based, the overlapping profiles of PANS and PANDAS symptomology with other more well-known conditions is compounding the issues, and leading to further delays in treatment.

PANS and PANDAS in the classroom

Rarely does a condition impact so dramatically on a child or young person in the classroom.

Children and young people with PANS and PANDAS can abruptly go from thriving in school to experiencing a wide range of severe difficulties. These can include:

• developing obsessive thoughts and behaviours
• the sudden onset of tics
• anxiety
• regression in behaviour
• anger
• eating issues
• problems sleeping.

In some cases, children and young people can develop unexpected special educational needs which can be abrupt, severe and complex. As a result, the SEND system is required to respond with an unfamiliar level of agility to a broad scope of often misunderstood needs.

Common educational themes reported by families include the misinterpretation of the root causes of the needs of their child or young person, inappropriate support, a narrative of blame, school attendance pressures and confusion caused by a lack of a diagnosis.

Family voices reflect an overwhelming picture of a systemic lack of understanding of the complexity, pattern and cumulation of needs that develop as a result of PANS or PANDAS. Professionals are conversely reporting increasing numbers of children and young people presenting with sudden onset SEND and are in some cases documenting a puzzling regression in skills. Yet less than a handful of teacher training courses include PANS and PANDAS, and the conditions are notably absent from the current attendance debate.

At the sharp end of PANS and PANDAS, children and young people have been sectioned and families referred for safeguarding concerns. Children who were thriving in mainstream can no longer access any education. Baselines are lost, childhoods are lost. The scale of trauma for families and young people living with PANS and PANDAS is palpable.

Hope and moving forward

Hope is calling. Evidence shows that with early identification and treatment, there is reason to be cautiously optimistic in terms of children and young people’s recovery and longer-term outcomes. 

Awareness across all sectors is slowly growing; the conditions are listed on Contact, the charity PANS PANDAS UK is included on more than 116 Local Offers and an online GP and paediatrician’s training module is also due shortly to be released. Clinical Nurse training is also being developed at John Moore’s University Liverpool and a multi-disciplinary group, the PANS PANDAS, Education, Social Care and health group, (including representatives from Educational Psychology) are currently in the process of creating guidance and a position statement for Local Authorities.

This workstream aims to clarify the current confusion, reduce the inequity of support and ensure that all relevant professionals have access to updated information and resource. A further working party has also been established to explore elements of neurodivergence and PANS and PANDAS; families have reported that their neurodivergent children and young people are particularly susceptible to misdiagnosis.

Progress towards early identification and support for children and young people living with PANS and PANDAS has long been hampered by the lack of concrete figures reflecting the scale of the issue. Thankfully an application for a UK wide surveillance study has recently been submitted to the British Paediatric Surveillance Unit (BPSU) and Child and Adolescence Psychiatry Surveillance System (CAPSS). This information will then play a critical role towards encouraging more research into the conditions and shaping future services. Currently though there are more than 6,700 families in the PANS PANDAS UK private Facebook support group reporting the onset of neuropsychiatric symptoms in their children or young people.  

Wider debate amongst education and allied professionals is also increasing as the conversation is getting louder. An equally heartrending and hope filled back bench parliamentary debate in October 2023, led by Wendy Chamberlain, MP saw some truly devasting education stories shared by politicians, both opening up the mechanisms of change and scattering some much-needed light onto the conditions.

The first and most obvious point is that a child who is too poorly to get dressed is probably unlikely to be in school. If they are in school, flare-ups of the condition—one of the symptoms is difficulties with cognitive processing—can mean dropping behind. When I recently asked children on the youth board about that, I was told that universally before they were ill they had loved school and had been doing well there. In fact, a survey carried out by PANS PANDAS UK this year found that, pre-onset, only 9% of patients were below the expected academic standard for their age group. After onset, the figure soared to 53%.’  

Wendy Chamberlain, MP for North East Fife

PANS and PANDAS training requests from education and allied professionals are also increasing. Sectors such as Occupational Therapy, CAMHS (Child and Adolescent Mental Health Services), Educational psychology and Specialist support teams, and the British Society of Paediatric Dentistry (BSPD) have all recently requested training. A recent High Court judicial review, which addressed the failure to provide adequate provision under section F of an Education, Health and Social Care plan (EHCP) also included PANS as one of the diagnoses listed.

Whilst the evolving story and timeline for children and young people living with PANS and PANDAS continues, the importance for the needs to be supported in parity with other health conditions cannot be overstated. Through developing, sharing and disseminating knowledge across professional networks, the educational landscape for children and young people living with PANS and PANDAS can and surely must improve.  

---

Deepen your understanding: PANS & PANDAS CPD session

We are delighted to be hosting two-hour CPD session on 2nd December, 4-6pm. Find out more information and book your place on our event page.

---

Resources to further develop understanding and awareness of PANS / PANDAS

Resources from PANS PANDAS UK for educational professionals 

Backbench Parliamentary debate on PANS/PANDAS 

PANS and PANDAS Steering group statement for primary and secondary care clinicians

Royal College of Nursing – PANS PANDAS: A mysterious and debilitating paediatric disorder

British Paediatric Neurological Association 

Further reading

Bleibach, A., Levy, S. E., Murphy, T. K., & Storch, E. A. (2023). Reliability and validity of a newly developed PANDAS/PANS questionnaire. Journal of Child and Adolescent Psychopharmacology. https://pubmed.ncbi.nlm.nih.gov/39232358/

Newby, M. J., Edwards, A., Delavore, J., & Baron, M. G. (2023). Sensory processing in children with Paediatric Acute-onset Neuropsychiatric Syndrome. Australian Occupational Therapy Journal. https://doi.org/10.1111/1440-1630.12935

PANS PANDAS UK. (2024). PANS, PANDAS & fabricated or induced illness: A guide for social work, healthcare & education professionals. https://panspandasuk.org/wp-content/uploads/2024/06/FII-Report-2024-PANS-PANDAS-Fabricated-or-Induced-Illness.pdf

Ringer, N., Asenlöf, P., Rosqvist, H. B., Olén, O., & Melin, K. (2023). Living with Paediatric acute-onset neuropsychiatric syndrome (PANS) – a qualitative study of children’s experiences in Sweden. Cogent Medicine, 10(1), 2259745. https://doi.org/10.1080/23311908.2023.2259745

Ringer, N., Ramklint, M., & Mellgren, A. (2022). Understanding parental stress among parents of children with Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) in Sweden. International Journal of Qualitative Studies on Health and Well-being, 17(1), 2080906. https://doi.org/10.1080/17482631.2022.2080906

---