PANS (Paediatric Acute-Onset Neuropsychiatric Syndrome) and PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections)

Also known as: PANS;PANDAS

Background

PANS and PANDAS are post-infectious disorders in which severe symptoms of obsessive-compulsive behaviours and/or severe eating restrictions develop suddenly.

“PANS” stands for Paediatric Acute-onset Neuropsychiatric Syndrome. It can be triggered by a variety of infections, including viral infections such as glandular fever, herpes simplex, chicken pox, influenza or Covid-19, and bacterial infections such as Mycoplasma pneumoniae, Borrelia burgdorferi, Borna disease virus and Toxoplasmosis gondii.

“PANDAS” stands for Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections. PANDAS is a subtype of PANS. It specifically refers to cases where an onset of neuropsychiatric symptoms (linked to both the brain and mental health) is linked to a Group A Streptococcus (GAS or ‘strep’) infection, such as in scarlet fever, strep throat, tonsillitis or peri-anal strep. However, post onset, viral infections or other illnesses could also trigger symptom exacerbations.

In this article

What are the symptoms of PANS/PANDAS?

In both PANS and PANDAS, the primary symptoms of OCD and/or severe eating restrictions are accompanied by additional secondary symptoms which may include tics, changes in normal behaviours, personality and mood, decreased cognitive ability and functioning at school, enhanced sensory sensitivities, anxiety and/or sleep and urinary disturbances.

Both the timing of onset and the specific profile of accompanying secondary symptoms vary between children but, in conjunction with the primary symptoms, can interfere with schooling, rapidly become extremely debilitating and reduce the quality of life for the child and family.

What are the causes of PANS/PANDAS?

The underlying cause of PANS and PANDAS is suspected to be an abnormal immune and/or inflammatory response to infection. Genetic susceptibility, developmental and environmental factors are also thought to contribute to individual children developing these conditions.

Both PANS and PANDAS are considered rare but are increasingly being recognized as causes of sudden onset childhood neuropsychiatric symptoms.

How is PANS/PANDAS diagnosed?

PANS and PANDAS are both clinical diagnoses and diagnoses of exclusion.

For PANS the diagnostic criteria are:

An abrupt, acute or dramatic onset of obsessive-compulsive disorder or severely restricted food intake along with two or more of the following symptoms which are not better explained by a known neurologic or medical disorder:

• Anxiety
• Tics
• Emotional lability and/or depression
• Irritability, aggression, and/or severe oppositional behaviours
• Behavioural (developmental) regression
• Sudden deterioration in school performance
• Motor or sensory abnormalities
• Insomnia and/or sleep disturbances
• Enuresis (bedwetting) and/or urinary frequency

PANDAS is a subset of PANS and is considered when there is a temporal correlation between streptococcal infection and onset of symptoms. Other criteria include:

• Presence of OCD and/or tics (particularly multiple, complex or unusual tics)
• Symptoms of the disorder must first become evident between 3 years of age and puberty
• Acute onset and episodic (relapsing-remitting) course
• Association with neurological abnormalities (such as, motor hyperactivity and unusual movements)

How is PANS/PANDAS treated?

Early treatment is recommended. If they remain untreated, individuals with PANS or PANDAS may develop chronic (long term) symptoms.

Current consensus treatment recommendations for PANS and PANDAS are set out in international peer reviewed guidelines. These recommended treatment approaches encompass psychiatric and behavioural interventions, immunomodulatory or anti-inflammatory therapies and antimicrobial intervention to treat or prevent infection.

Work is commencing in the UK in 2024 to develop consensus clinical guidelines based on current available knowledge.

Inheritance patterns and prenatal diagnosis of PANS/PANDAS

Inheritance patterns
N/A

Prenatal diagnosis
N/A

Support for people affected by PANS/PANDAS and their families

If your child is affected by a medical condition or disability, we can help. Call our freephone helpline on 0808 808 3555 to get information, support and advice. We also offer emotional support for parents via our Listening Ear service.

We have a range of parent guides on aspects of caring for a disabled child in our resource library. You may also find our Early Years Support useful, which contains links to parent carer workshops and help for families going through the diagnosis process.

We’ve listed a support group below and you can also meet other parents online in our closed Facebook group.

PANS PANDAS UK

PANS PANDAS UK

Email: info@panspandasuk.org
Website: www.panspandasuk.org

PANS PANDAS UK are the only UK charity (Registered Charity number: 1178484) working to support people living with the neuropsychiatric conditions PANS and PANDAS. They strive to inform and support all children, young people and adults affected by these devastating conditions. They are pushing for better awareness of PANS and PANDAS and for improved healthcare and support.

On their website you will find more information about their work and about the conditions. They host a private Facebook Support Group for parents and carers. They also offer free, CPD-accredited online teacher training to ensure that education professionals understand and know how to support children and young people with PANS and PANDAS.

Group details added April 2024

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Credits

Medical text written by PANS PANDAS UK March 2024; approved by Professor Rajat Gupta, Consultant Paediatric Neurologist, Birmingham Children’s Hospital, Birmingham, UK.

Although great care has been taken in the compilation and preparation of all entries to ensure accuracy, we cannot accept responsibility for any errors or omissions. Any medical information  provided is for education/information purposes and is not designed to replace medical advice by a qualified medical professional.