The SEN Resources Blog

Don’t worry if you have never heard of these medical conditions and you are either a parent and/or education professional, you are not alone! There have typically been low levels of awareness about the conditions in the UK, but all this is set to change with the recent developments in health. These include the formation of a clinical steering group, and the declaration by Maria Caulfield MP (Parliamentary Under-Secretary of State for Health and Social Care) that both PANS and PANDAS are recognised conditions in the NHS. Potential progress in diagnosing and treating children is now bringing hope to families who have historically faced huge challenges.

What are PANS and 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.

Children with PANS and PANDAS can quickly change from thriving in school to developing a broad range of symptoms affecting many different areas of their functioning. Symptoms include extreme obsessive-compulsive behaviours, motor and vocal tics, severe separation anxiety and behavioural regression (such as ‘baby-talk’). Rage, restricted food intake, sleep disturbance and urinary problems are also frequently observed. Children with these conditions also often experience sensory sensitivities, hallucinations, self-harm, and suicidal thoughts.  The conditions are relapsing and remitting which means that the pattern of the symptoms can fluctuate a lot.

Not all children will have every symptom and 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, red
flags in safeguarding, or behaviour disorders. Children can of course have more than one
condition or have other contributing factors in their lives.

A child with PANS and PANDAS may:

• Develop lots of unexplained changes in different areas of their functioning 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 you would not typically expect 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.

• Struggle with emotional regulation skills.

• 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.

How many children are affected by PANS/PANDAS in the UK?

PANS, PANDAS UK charity is helping over 5,900 families with children who may have PANS or PANDAS. The numbers joining their Facebook support group are rapidly growing as awareness grows. Clinicians are now working on collecting data to better understand the extent of the issue in the UK.

How can you provide support for a child with PANS or PANDAS?

• Learn about the conditions and share the information with colleagues.

• Be aware of the diagnostic criteria to ensure that none of the symptoms are ‘missed.’

• Capture the child’s baseline, (before the development of symptoms)

• Write a supporting letter for families to take to a GP evidencing any changes.

• Understand that the symptoms are very changeable, so assessments are only a
  snapshot in time.

• Recognise that PANS or PANDAS are complex. A school is unlikely to recognise the full impact of the condition without close communication with the family.

• Provide supports that are sufficiently flexible to support a child during different
  phases of the condition i.e., when acutely unwell and during recovery.

• PANS and PANDAS are complex conditions. Work as a team.

Further information

Listen to my podcast episode with PANS PANDAS UK – ‘SEND in the Experts with Georgina Durrant’

Read general information about the conditions on the PANS PANDAS UK website here

And have a look at their Education resources here