Paediatric acute-onset neuropsychiatric syndrome (PANS) is a neuropsychiatric condition in children. It is characterized by a sudden onset of obsessive-compulsive disorder (OCD) and/or restricted food intake. Individuals may also have other symptoms such as:

• anxiety
• emotional changes or depression
• attention deficit hyperactivity disorder (ADHD)
• irritability or aggression
• decline in school performance
• sensory or motor abnormalities
• tics
• sleep disturbances
• changes in urinary frequency such as urgency to urine or bedwetting

Symptoms and severity can vary between individuals. The exact cause of PANS is not well understood. It is suspected to be triggered by various infectious or environmental factors, including stress.

Paediatric autoimmune neuropsychiatric disorders associated with Streptococcus infections (PANDAS) is a subtype of PANS that share similar symptoms. Unlike PANS, PANDAS is specifically associated with recent Group A streptococcal infection.

Below on this page is some information about this condition as well as links to useful resources for Australians living with a rare disease.

Synonyms: PANS.

Universal rare disease classifications provide a common language for recording, reporting and monitoring diseases. Please visit the Rare Disease Classifications page for more information about these internationally recognised classifications.

PANS:

There is no known ORPHA code or ICD-11.

PANDAS:

ORPHA:66624 PANDAS

ICD-11: 8E4A.0 Paraneoplastic or autoimmune disorders of the central nervous system, brain or spinal cord

Rare diseases typically display a high level of symptom complexity. There is often a wide range of symptoms and the symptoms may vary between individuals in terms of its presentation, severity, duration and impact.

Please speak to your medical team to learn more about the symptoms of this condition.

Rare diseases are often serious and progressive, exhibiting a high degree of symptom complexity, leading to significant disability. Majority of the estimated two million Australians living with a rare disease meet the Australian Government’s definition for disability (in accordance to the Australian Public Service Commission and Australian Bureau of Statistics), and many experience severe and permanent disability impacts. If you or someone you care for is experiencing disability-related impacts from a rare condition, please speak with a health or disability professional for advice. Information about relevant disability support can be found at the RARE Portal’s Disability Support Information page.

The exact cause of PANS is not fully understood. It is suspected that infections or environmental factors trigger autoimmune and/or inflammatory reactions in the body, leading to the symptoms of PANS.

A timely diagnosis is critical for better patient outcomes, the provision of the best possible care and treatment options, access to services and support, increased reproductive confidence and the ability to participate in clinical trials.

Please speak to your medical team to learn more about the available diagnostic pathways for this condition.

Please speak to your medical team to learn more about the possible treatment or management options for your condition. Treatment will depend on an individual’s specific condition and symptoms. It is also important to stay connected to your medical team so that you can be made aware of any upcoming clinical trial opportunities. For many rare diseases, treatment options may be limited. Participation in a clinical trial may provide access to new or emerging therapies.

Healthcare professionals involved in the care of individuals with PANS may include general practitioners (GP), paediatricians, psychiatrists, rheumatologists, neurologists, immunologists, and occupational therapists. The need for different healthcare professionals may change over a person’s lifetime and extend beyond those listed here.

Clinical care for rare diseases often involves a multidisciplinary team of medical, care and support professionals. Please note that the information provided here is as a guide and that RVA does not necessarily monitor or endorse specific clinics or health experts.

This may not be applicable to all rare diseases but for many, palliative care services may be relevant and useful. Palliative care services are available for people (adults, children and their families) living with a life-limiting illness and is not only for end-of-life care. It can also help at any stage of illness from diagnosis onwards, and will look different for different people. Palliative care services provide assistance, support, resources and tools to help people manage their illness and the symptoms, ease pain, and improve comfort and quality of life. If this is relevant to you and you wish to find out more information about palliative care and how it can help you, please visit:

• Australian Institute of Health and Welfare: Palliative care Overview
• Australian Government Department of Health, Disability and Ageing: Palliative care
• Palliative Care Australia

We are not aware of any clinical care guidelines for PANS in Australia.

The following guidance is available from international experts outside Australia; however, there may be information that is not relevant or applicable to the Australian context, and may not be up to date:

Clinical Management of Pediatric Acute-Onset Neuropsychiatric Syndrome Part I Psychiatric and Behavioural Interventions, Part II Use of Immunomodulatory Therapies, Part III Treatment and Prevention of Infections – developed by the PANS Research Consortium including immunologists, rheumatologists, neurologists, infectious disease experts, paediatricians, psychiatrists, nurses, and scientists from the United States of America; published in 2017.

Pediatric acute-onset neuropsychiatric syndrome and pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections: a delphi study and consensus document about definition, diagnostic criteria, treatment and follow-up – developed by paediatricians from Italy; published in 2024.

Individuals living with rare diseases may have complex medical issues and disabilities, which are not always visible. It is often useful to refer to their medical history as well as personal information such as a medical card, doctor’s letter, or if available, a rare disease passport, for relevant information.

In addition, individuals, their parents, families and carers often develop extensive expertise on their specific rare disease. It is important to recognise that they can contribute valuable knowledge about their rare condition. Rare diseases often impact individuals differently, so it’s important to consider a person’s lived experience.

If you know of any relevant emergency management guidelines or information relevant to emergency care, please let us know via the Contribute page.

Australian Organisations:
PANS Australia
Website: https://pansaustralia.com/

PANDA/PANS Australia and New Zealand Advocacy and Support
Website: https://www.pansaustralianz.com/

International Organisation:
PANDAS Network
Website: https://pandasnetwork.org/

Please note that RVA does not monitor or endorse each group/organisation’s operational governance and activities. When engaging with a group, please consider the information on the RARE Portal’s Finding Helpful Peer and Community Supports page.

Paediatric acute-onset neuropsychiatric syndrome varies between individuals, and each person’s experience is unique.

If you would like to share your personal story with RVA, please visit the Rare Voices Australia: Share Your Story page. RVA will consider your story for publishing on our website and inclusion on the RARE Portal.

For information on available government and social services that provide support for individuals with a rare disease, please visit the National and State Services pages.

People living with a rare disease often face unique challenges such as diagnostic delays, misdiagnoses, limited treatment options, and limited access to rare disease specialists and support. These challenges may impact people’s emotional wellbeing and quality of life. Many find it helpful to seek mental health and wellbeing support to cope with ongoing stress and uncertainty. Connecting with people who have shared experiences through a support group may also be helpful. Information about relevant mental health and wellbeing support can be found at:

• Mental Health and Wellbeing Support for Australians Living with a Rare Disease
• The National and State Services pages underneath the ‘Mental Health’ sections listed

Further information on PANS can be found at:

• Genetic and Rare Diseases (GARD) Information Center: Paediatric acute-onset neuropsychiatric syndrome
• Healthdirect: Obsessive-compulsive disorder (OCD)

Human Phenotype Ontology (HPO): PANDAS

This page has been developed by Rare Voices Australia (RVA)’s RARE Portal team.

If you are aware of any additional information that may benefit stakeholders with an interest in this page, or if you notice any broken links or inaccurate information, please let us know via the Contribute page.