Spotlight on PANS and PANDAS

Covid-19 has brought about increased awareness of children’s mental health issues. In spite of this, some conditions are still failing to get the attention they deserve.

Have you heard of PANS or PANDAS?

‘Long Covid’ is a term with which we have all become familiar over the past two years of the pandemic. Like Long Covid, PANS and PANDAS occur after an infection. Also, like Long Covid, the impacts on children and families can be catastrophic and can affect both physical and mental health.

What are PANS and PANDAS?

PANS (Paediatric Acute Onset Neuropsychiatric Syndrome) and PANDAS (Paediatric Auto-immune Disorder Associated with Streptococcal Infection) are inflammatory brain disorders that affect both physical and mental health. They can be triggered by common infections (for example ‘strep throat’ or chickenpox) which, in certain people, will go on to cause inflammation in the brain.

Onset of symptoms is usually abrupt. Overnight, children* with PANS and PANDAS can go from being happy and healthy to being desperately ill. Symptoms such as severe obsessive-compulsive behaviours, motor and vocal tics, severe separation anxiety and behavioural regression (such as ‘baby-talk') are a few of the most common symptoms. Rage, eating restriction, sleep disturbance and urinary problems are also frequently observed. Children with these conditions also suffer with extreme sensory sensitivities, hallucinations, self-harm and suicidal thoughts.

Lack of awareness and understanding in the UK means that children are frequently left without diagnosis or access to appropriate treatment. They are often misdiagnosed as having late onset ASD (autism spectrum disorder) or a psychiatric disorder such as OCD or ADHD. Years of childhood are lost unnecessarily to suffering when prompt diagnosis and inexpensive medications can resolve symptoms.

Change is needed to ensure that these children receive the simple treatments they need, and the right support as they heal.

Charity PANS PANDAS UK can help. PANS PANDAS UK is the only UK charity supporting children and families living with these conditions. We provide information, advocacy and community support to patients and carers. We raise awareness of the symptoms and treatment options for healthcare professionals so that they are better equipped to recognise when a child may have PANS or PANDAS. We are working to provide training in educational settings so that families and children living with these conditions receive the support they so desperately need.

Get in touch if you think that you, or someone you know, may be affected by these conditions you can find out more at www.panspandasuk.org or email secretary@panspandasuk.org. Alternatively, find us on Facebook, Twitter and Instagram.

PANS PANDAS UK is a charity registered in England and Wales Charity number: 1178484 Registered office: Greville House, 10 Jury Street, Warwick, Warwickshire CV34 4EW

*Adult onset is possible, and many children go on to suffer with these conditions into adulthood.

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With thanks to PANS PANDAS Awareness UK