PANS / PANDAS

Paediatric acute-onset neuropsychiatric syndrome (P.A.N.S.), paediatric autoimmune neuropyschiatratric disorders with streptococcal infections (P.A.N.D.A.S.), Sydenham chorea, Sydenham's chorea

What is PANS / PANDAS?

PANS stands for Paediatric Acute-onset Neuropsychiatric Syndrome, and PANDAS stands for Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.

They are both autoimmune conditions that affect children and result in neuropsychiatric disorders.

What causes PANS / PANDAS?

PANS is triggered by a faulty immune response in a child to a common infection in which antibodies attack the brain leading to inflammation. This then causes the neuropsychiatric symptoms to appear.

PANDAS is a subgroup of PANS and is triggered specifically by a faulty immune response to streptococcal infections.

What are the symptoms of PANS / PANDAS?

The symptoms of PANS include the sudden onset of obsessive compulsive disorder or a severely restricted food intake. For a child to be diagnosed with PANS they must also have two or more of the following symptoms that cannot be explained by another condition:

  • Anxiety
  • Tics
  • Constantly changing emotions and/or depression
  • Irritability, aggression, and/or severely oppositional behaviours
  • Developmental regression – the loss of previously acquired skills/milestones
  • Sudden deterioration in academic performance.
  • Motor or sensory abnormalities
  • Insomnia and/or disturbed sleep
  • Not being able to control urination and/or abnormal urinary frequency.

The symptoms of PANDAS usually occur between the age of 3 and puberty following a streptococcal infection. They include the sudden onset of obsessive compulsive disorder and/or tics. These symptoms can then increase and decrease. Flare ups of PANDAS are often experienced following illnesses or periods of stress.

Are you affected by PANS / PANDAS?

If you’re affected by PANS / PANDAS, The Brain Charity can support you.

We are the only charity in the UK to be here for every one of the more than 600 different neurological conditions in existence. Individually, many are rare, but combined, they affect 1 in 6 people.

We provide practical help on all aspects of living with PANS / PANDAS, emotional support such as counselling, phone befriending and group therapy and social activities to people with PANS / PANDAS from all over the UK from our centre in Liverpool.

Looking to talk to someone?

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Phone us

Contact The Brain Charity now

Our friendly Information & Advice Officers are here to help. We endeavour to respond to all enquiries within 10 working days.

0151 298 2999

Looking to talk to someone?

  • Please tell us which neurological condition you are affected by and what you need support with.

Caring for someone affected by PANS / PANDAS

We support carers, friends and family too

Are you a carer for or relative of someone with PANS / PANDAS? It’s just as important for you to look after your own physical and mental wellbeing too.

The Brain Charity provides free support for carers, friends and family of people with any form of neurological condition, including PANS / PANDAS, from anywhere in the UK.

We also run an additional carers advocacy service for all carers in Liverpool, regardless of which type of condition the person they care for has.

You don’t need to be a formal or registered carer

We can help you even if you don’t view yourself as a formal carer or claim Carer’s Allowance. Find out some of the ways we support carers below.

Other resources

Other resources The Brain Charity's library

The Brain Charity’s library has a range of resources on PANS and PANDAS and on many other disability-related issues.

Support groups

PANS PANDAS UK Support Group

A Facebook group made up of parents who either suspect their child has PANS or PANDAS, or whose child has received an official diagnosis of PANS or PANDAS.

Website: www.facebook.com/groups/189721514954497

Support groups at The Brain Charity

Are you interested in setting up a PANS PANDAS support group, or do you already run one? Email activities@thebraincharity.org.uk to let us know.

Alternatively, you can check out our list of related support groups here.

Other charities

PANS PANDAS UK

PANS PANDAS UK aims to raise awareness and to improve our understanding of the conditions. They also work with medical professionals to ensure better diagnosis and early effective treatment for those with the conditions.

Website: www.panspandasuk.org