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What are PANS and PANDAS?

Introduction

PANS and PANDAS are conditions that affect the brain. People with PANS or PANDAS experience a variety of symptoms ranging from mental health symptoms to changes in behaviour and difficulties with movement.

PANS

Paediatric Acute-onset Neuropsychiatric Syndrome

PANDAS

Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections

Description

PANS and PANDAS are neuropsychiatric conditions. This means they are medical conditions which have both neurological (eg. difficulties with thinking or moving) and psychiatric (ie. mental health) symptoms.

PANS and PANDAS are often grouped together because they share lots of symptoms in common. Both conditions can begin quite suddenly, and symptoms may come and go over time.

Symptoms

People with PANS and PANDAS may experience a variety of different physical and mental health symptoms.

Such as:

  • Anxiety (heightened anxiety, separation anxiety, irrational fears, panic episodes)
  • Tics
  • Emotional lability and/or depression
  • Irritability, aggression, and/or severely oppositional behaviours
  • Behavioural (developmental) regression (increase in temper tantrums, loss of age-appropriate language, clingy behaviour not related to anxiety)
  • Sudden deterioration in school performance (due to difficulties with memory, concentration, hyperactivity, impulsivity, new deficits of visuospatial skills)
  • Motor or sensory abnormalities (dysgraphia, clumsiness, tics, new sensory sensitivities to light, noise, smell, taste or texture)
  • Insomnia and/or sleep disturbances
  • Enuresis and/or urinary frequency

*Sometimes hallucinations and/or psychosis might be part of the symptoms experienced, however they are not officially part of the diagnostic criteria.

Remember that children with PANS or PANDAS may present with a different combination of symptoms, and that these symptoms may change over time. You do not need all the symptoms in the list to be diagnosed with PANS or PANDAS.

Common Questions

What are the diagnostic criteria for PANS and for PANDAS?

PANS (Paediatric Acute-onset Neuropsychiatric Syndrome)

PANS is a neuropsychiatric condition which is triggered by a misdirected immune response to a variety of triggers, resulting in a constellation of symptoms as outlined below.

​PANS is a clinical diagnosis and there is no specific test which will prove or disprove the condition. In order for a diagnosis to be made, presentation of the following symptoms must occur:

PANS Diagnostic Criteria

An abrupt, acute, dramatic onset* (usually within 24-48 hours) of obsessive compulsive disorder (OCD)** 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 (heightened anxiety, separation anxiety, irrational fears, panic episodes)
  • Tics
  • Emotional lability and/or Depression
  • Irritability, Aggression, and/or Severely Oppositional Behaviours
  • Behavioural (Developmental) Regression (increase in temper tantrums, loss of age-appropriate language, clingy behaviour not related to anxiety).
  • Sudden Deterioration in School Performance (due to difficulties with memory, concentration, hyperactivity, impulsivity, new deficits of visuospatial skills)
  • Motor or Sensory Abnormalities (dysgraphia, clumsiness, tics, new sensory sensitivities to light, noise, smell, taste or texture).
  • Insomnia and/or Sleep disturbances
  • Enuresis and/or Urinary frequency
  • ​Whilst not part of the diagnostic criteria, in approximately 25% of cases there have been reports of Psychosis and/or Hallucinations

​PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections)

PANDAS is a subset of PANS. Similarly, it is a neuropsychiatric condition which is triggered by a misdirected immune response to a Streptococcal infection which results in a variety of symptoms as outlined below.

PANDAS Diagnostic Criteria

Usually starting with an acute onset of obsessive compulsive disorder and/or tics, particularly multiple, complex or unusual tics. PANDAS symptoms can then appear to wax and wane with the child experiencing flares periodically, following illness or periods of stress. The child is usually between the ages of 3 and puberty when first symptoms occur and usually appear following a streptococcal infection such as Sinusitus, Ear infections or Scarlet Fever. In some cases children can carry the streptococcus bacteria without showing signs of illness.

Whilst it is not a diagnostic requirement, in addition to OCD** and/or tics, children may also experience co-morbid symptoms similar to those seen in PANS.​

* We would like to note that the requirement within the diagnostic criteria for an abrupt or acute onset was originally stipulated in order to create a well-defined cohort of patients for research purposes. It is beginning to be acknowledged that onset may not always be as rapid as the diagnostic criteria currently state, however they have yet to be updated to reflect this.

** OCD may include any of the following:

  • Contamination obsessions and compulsions
  • Obsessions that harm will come to others and/or related compulsions
  • Sexual or religious obsessions
  • Repeating compulsions
  • Symmetry and exactness obsessions
  • Ordering/arranging compulsions
  • Counting compulsions
  • Checking obsessions or compulsions
  • Excessive reassurance seeking
  • Need to touch, tap or rub
  • Intrusive images, words, music or nonsense sounds
  • Ritualised eating behaviours​

*** Severely restricted food intake may be related to contamination fears, obsessional fears of choking, or other obsessional fears including a new obsession with body image or weight.

What is PANS (Paediatric Acute-onset Neuropsychiatric Syndrome)?

PANS is a clinical diagnosis.

The major symptoms of PANS are:

    • OCD
      or
    • Restricted eating

To be diagnosed with PANS, a person only needs to develop 1 of the major symptoms (OCD or restricted food intake) as well as at least 2 other symptoms from the PANS/PANDAS symptom list.

Symptoms develop suddenly (usually within 24-48 hours) and very severely. Symptoms appear to get better before getting worse periodically – this is referred to as a relapsing-remitting course.

In PANS, the development of symptoms can be triggered by various different infections. A variety of infections have been reported as triggers for PANS. Reported infections include Lyme disease, flu (for example H1N1), mononucleosis (mono), and mycoplasma bacteria.

Recent research also suggests COVID-19 infection can act as a trigger for PANS.

What is PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections)?

Like PANS, PANDAS is a clinical diagnosis.

The major symptoms of PANDAS are:

  • OCD

and/ or

  • Tics

To be diagnosed with PANDAS, a person only needs to develop 1 of the major symptoms (OCD or tics). However, many people with PANDAS also have other symptoms from the PANS/PANDAS Symptom List.

Like PANS, symptoms develop suddenly (usually within 24-48 hours) and very severely. Symptoms appear to get better before getting worse periodically – this is referred to as a relapsing-remitting course.

In PANDAS, the development of symptoms happens after a ‘Group A Streptococcal (GAS) infection’, more commonly known as ‘strep’. Strep infections cause many common illnesses such as strep throat (a mild sore throat), impetigo, cellulitis, tonsillitis, scarlet fever and pneumonia.

For more information on GAS infections click this link. (https://ukhsa.blog.gov.uk/2022/12/05/group-a-strep-what-you-need-to-know/).

What are the symptoms of PANS and PANDAS?

• Anxiety (heightened anxiety, separation anxiety, irrational fears, panic episodes)
• Tics
• Emotional lability and/or depression
• Irritability, aggression, and/or severely oppositional behaviours
• Behavioural (developmental) regression (increase in temper tantrums, loss of age-appropriate language, clingy behaviour not related to anxiety)
• Sudden deterioration in school performance (due to difficulties with memory, concentration, hyperactivity, impulsivity, new deficits of visuospatial skills)
• Motor or sensory abnormalities (dysgraphia, clumsiness, tics, new sensory sensitivities to light, noise, smell, taste or texture)
• Insomnia and/or sleep disturbances
• Enuresis and/or urinary frequency

*Sometimes hallucinations and/or psychosis might be part of the symptoms experienced, however they are not officially part of the diagnostic criteria.

Remember that children with PANS or PANDAS may present with a different combination of symptoms, and that these symptoms may change over time. You do not need all the symptoms in the list to be diagnosed with PANS or PANDAS.

Who gets PANS/PANDAS?

A diagnosis of PANDAS must be made between 3 years of age and puberty. A person of any age can be diagnosed with PANS. Although both conditions have the word ‘paediatric’ in their name, it is known that the conditions may persist into adulthood.

How are PANS and PANDAS diagnosed?

There are not yet any specific tests or biomarkers which prove or disprove the conditions. This means that a diagnosis of PANS or PANDAS is both a clinical diagnosis and a diagnosis of exclusion. A clinical diagnosis is one made based on specific signs and symptoms observed by a medical professional rather than on lab tests or biomarkers. A patient should be fully evaluated for other known illnesses or diseases that could cause the observed symptoms. The workup should rule those other illnesses in or out. A diagnosis is to be made based on the analysis of the patient’s medical history, a review of their current symptoms and a physical examination. Lab work and additional testing can be ordered to identify an infectious trigger, rule out other diagnoses, and inform treatment plans.

What causes PANS/PANDAS?

Recent scientific research suggests PANS and PANDAS are caused by an abnormal immune and/or inflammatory response to infection.

In the case of PANS, the abnormal immune/inflammatory response that causes symptoms has been reported to have been triggered by a variety of different infections.

The abnormal response in PANDAS is triggered by Group A Streptococcal (GAS) infection.

What are the treatments for PANS/PANDAS?

PANS and PANDAS are tough, but they are treatable.

A GP may initially prescribe antibiotics to treat the Group A Streptococcus (GAS) or other bacterial infection that may have triggered PANS/PANDAS. They may wish to refer your child to see a paediatrician, neurologist or immunologist to carry out some further tests and decide a suitable treatment plan.

For treatment of symptoms such as OCD and other mental health concerns, CBT can be useful. Your GP may wish to refer your child to CAMHS (Child and Adolescent Mental Health Services). This mental health support is an important part of the support available for someone with PANS and PANDAS, however it is important that your child also receives a full medical evaluation.

At this point in time there are no UK treatment guidelines, however two sets of international, peer-reviewed guidelines have been published. Click here to view the international guidelines.

Want to know more?

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Glossary

  • ADHD
    Attention Deficit Hyperactivity Disorder
  • AE
    Auto-immune Encephalitis
  • ARFID
    Avoidant Restrictive Food Intake Disorder
  • ASD
    Autism Spectrum Disorder
  • CAMHS
    Child and Adolescent Mental Health Service
  • CBT
    Cognitive Behavioural Therapy
  • Dysgraphia
    difficulty writing by hand
  • EHCP
    Education, Health and Care Plan
  • Emotional Lability
    Rapid, and dramatic changes in mood (for example uncontrollable laughter to crying)
  • Enuresis
    wetting
  • GAS
    Group A Streptococcal infection
  • NHSE
    NHS England
  • NICE
    National Institute for Health and Care Excellence
  • OCD
    Obsessive Compulsive Disorder
  • PP
    PANS PANDAS
  • PPUK
    PANS PANDAS UK
  • PPN
    PANS Physicians Network
  • PPSG
    PANS PANDAS Steering Group
  • SENCo
    Special Educational Needs Coordinator
  • SIGN
    Scottish Intercollegiate Guidelines Network to the glossary
  • Tic
    Sudden repetitive movement (motor tic) or sound (vocal tic) which is difficult or impossible to control