Have you heard of PANS or PANDAS?

PANS and PANDAS are post-infectious autoimmune and/or neuro-inflammatory medical conditions which affect both physical and mental health. They can be triggered by common infections (for example strep throat, chickenpox, or influenza). These conditions mainly affect children, and onset usually happens between 3 and 13 years. PANS can also affect adults. An exacerbation of neuro-psychiatric symptoms post infection is known colloquially as a ‘flare.’ 

Children with PANS and PANDAS can quickly change from thriving in school to developing a broad range of symptoms including:* 

• unexpected learning difficulties  
• extreme obsessive-compulsive behaviours
• motor and vocal tics
• severe generalised and separation anxiety
• sensory needs
• behavioural regression
• emotional regulation issues
• restricted food intake
• sleep disturbance
• urinary problems

*Any child who is displaying these symptoms should be promptly evaluated by a medical practitioner. 

Not all children will have every symptom. The severity of the symptoms can also vary greatly from child to child, and within the same child at different stages of the condition.    

• The signs of PANS and PANDAS are often missed. The conditions are very easy to confuse with neurodevelopmental conditions, attachment disorders, poor parenting, safeguarding or behaviour disorders.  
• Children can of course have more than one condition or have other contributing factors in their lives.  
• It is important for educators to be aware of the early signs and to understand how PANS or PANDAS can present in the classroom. Early identification and support lead to better outcomes.

Indicators  

A child with PANS and PANDAS may:  

• Demonstrate multiple unexplained changes in different areas that might not be seen as linked, for example working memory changes, restricted food intake and the development of tics.
• Develop sudden and unexpected SEN across all four areas of the Code of Practice.
• Present with much more severe symptoms at home than at school, or vice versa.
• Struggle with their attendance and separating from their primary caregiver.
• Develop needs in areas that would not be expected for their age group, for example a deterioration in fine or gross motor skills in an older child.
• Fluctuate significantly in terms of symptoms and their ability to access work.
• Report very unusual symptoms such as feeling, seeing or hearing things that are not there, feeling unsafe and, as if they are being followed for instance.
• Newly display behaviours more commonly found in a much younger child.
• Move further away from their pre-onset academic, social, physical or cognitive baseline.

Key Facts 

• PANS and PANDAS are medical conditions that can easily be missed or misinterpreted. Keep an open mind. Educational professionals may well be the first to spot the early signs.
• Typically, children with PANS and PANDAS develop multiple symptoms affecting different areas of their functioning both at home and at school.
• Children with PANS and PANDAS are often aware of the change in their own functioning. This is extremely distressing for them.
• Due to low levels of awareness, it is currently difficult in the UK to get a timely diagnosis and treatment for PANS or PANDAS. The conditions are, however, recognised by the NHS.
• PANS and PANDAS are health conditions – ensure that you are following the statutory requirements for supporting children with medical conditions.

Good Practice 

There is yet to be UK research on suitable approaches for children living with PANS or PANDAS. This information is likely to be helpful. 

PANS and PANDAS are complex. 

• Learn about the conditions and disseminate awareness amongst colleagues.
• Be aware of the diagnostic criteria to ensure that none of the symptoms are missed, and that all of the child’s needs are identified and supported.
• Work as an informed team with any other professionals involved in the child’s care

The conditions are usually relapsing and remitting 

• Assessments are only a snapshot in time. It is very easy to under or over-estimate a child’s level of needs. Difficulties in PANS or PANDAS can be transient.
• Undertake observations and provide professional evidence. Write a supporting letter for families to take to a GP including presentation of the child pre- suspected onset, a list of new symptoms, steps in place to support the child and the response of the child to those steps.
• Capture the child’s baseline including their suspected pre-onset attainment, progress and attendance levels.
• Provide accommodations that are sufficiently flexible to support a child during different phases of the condition i.e., when acutely unwell, during recovery and when recovered.
• Assess whether the child is going ‘back to baseline’ following a flare and ensure that this information is shared with family/health care team.

School-family relationships are crucial 

• Children can present very differently at school and at home.
• A school is unlikely to recognise the full impact of the condition without close communication with the family.
• No one could see PANS or PANDAS coming. It can challenge the most resilient of families. Provide understanding for the whole family and additional support for siblings.
• Adopt a reflective and pupil-led approach: having a trusting and supportive relationship in school is key.
• Put in proactive support early.

PANS PANDAS UK is the only UK charity currently supporting families and children with these conditions.

Further education resources are available at https://www.panspandasuk.org/education

SEND in the Expert podcast on PANS/PANDAS with Georgina Durrant

https://podcasts.apple.com/gb/podcast/send-in-the-experts-with-georgina-durrant/id1598292028

Trauma

PANS PANDAS UK have collaborated with the clinical psychologist Dr Naomi Fisher

https://www.panspandasuk.org/trauma

Free CPD accredited teacher training on PANS/PANDAS can be accessed via Eventbrite https://eventbrite.co.uk/o/pans-pandas-uk-47089816353