What are PANS and PANDAS?
PANS and PANDAS are called ‘neuropsychiatric conditions’. This means they are medical conditions which have both neurological (eg. difficulties with thinking or moving) and psychiatric (ie. mental health) symptoms.
People with PANS or PANDAS experience a variety of symptoms ranging from abrupt changes in behaviour, difficulties with movement and the often-sudden onset of mental health challenges.
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.
This video was created for PANS PANDAS UK by interns Ines Coimbra and Lily Kingston. It explains the causes and symptoms of PANS and PANDAS.
PANS and PANDAS are two separate diagnoses, with distinct diagnostic criteria:
PANS
Paediatric Acute-onset Neuropsychiatric Syndrome
PANDAS
Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections
To be diagnosed with PANS, an individual needs to develop sudden onset* of either obsessive-compulsive behaviours or restricted food intake, as well as at least two other symptoms from the list of symptoms below.
Onset of PANS can occur at any age.
To be diagnosed with PANS, an individual needs to develop sudden onset*east two other symptoms from the list of symptoms below.
*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, there are still differences in opinion regarding what acute onset means, and the diagnostic criteria have not yet been updated to reflect this acknowledgement.
To be diagnosed with PANDAS, an individual needs to develop sudden onset* of either obsessive-compulsive behaviours or tics, and fit all five criteria for PANDAS:
I. Presence of obsessive-compulsive behaviours or tics
II. Prepubertal symptom onset (symptoms must appear before puberty starts, which can be different for each child)
III. Acute symptom onset and episodic course (symptoms come and go, or ‘flare’, when exposed to trigger)
IV. Temporal association between Group A streptococcal infection and symptom onset or exacerbations (There must be a link which shows evidence of a strep A infection and symptoms of PANDAS beginning – or worsening in the case of young people who already have a diagnosis of PANDAS.)
V. Association with neurological symptoms (such as an increased level of movement such as fidgeting/difficulty remaining seated and involuntary, random movements).
Symptom list
This is a non-exhaustive list of symptoms which can be attributed to PANS or PANDAS, if they are not better explained by a known neurologic or medical disorder:
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- Anxiety (heightened anxiety, separation anxiety, irrational fears, panic episodes)
- Tics
- Emotional lability or depression
- Irritability, aggression, severely oppositional behaviours
- Behavioural (developmental) regression (e.g.: 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 Hallucinations
Common Questions
Who can develop PANS or PANDAS?
- A diagnosis of PANDAS can only be made if onset of symptoms starts between the ages of 3 years old and the onset of puberty.
- PANS can be diagnosed in any person of any age, despite the confusing fact that the condition has the word ‘paediatric’ in the name.
- Both conditions can persist into adulthood, regardless of when symptoms began.
How are PANS and PANDAS diagnosed?
There are not yet any specific tests or biomarkers which can confirm a diagnosis of PANS or PANDAS. This means that a diagnosis of PANS or PANDAS is both a clinical diagnosis and a diagnosis of exclusion; ruling out other causes for symptoms until PANS or PANDAS is established as the remaining cause. Lab work and additional testing can be ordered to identify an infectious trigger, rule out other diagnoses, and inform treatment plans.
What causes PANS and PANDAS?
Much more research into the causes of PANS and PANDAS is needed before this question can be answered definitively. The exact mechanisms and triggers of the conditions are still under investigation, and research is ongoing to understand more fully why some people develop PANS and PANDAS. Currently, it is thought that PANS and PANDAS are likely to be autoimmune and/or neuroinflammatory in nature, meaning that the body responds abnormally to infection.
In PANS, the trigger for this abnormal response may vary. Reported triggering infections include Lyme disease, flu (for example H1N1), mononucleosis (mono), mycoplasma bacteria and COVID-19 infection.
In PANDAS, the abnormal response happens in response to a Group A Streptococcal (GAS) infection. It is proposed that the infection triggers an autoimmune response where the body’s immune system mistakenly attacks parts of the brain, leading to inflammation that affects thought, behaviour, and movement.
How can PANS and PANDAS be treated?
PANS and PANDAS are tough, but they are treatable.
A GP may initially prescribe antibiotics to treat the Group A Streptococcus (GAS), if applicable, or other bacterial infection. They may wish to refer a child or young person to see a paediatrician, neurologist or immunologist to carry out some further tests and decide a suitable treatment plan.
To help manage symptoms such as obsessive or compulsive behaviours, eating restriction, anxiety, or emotional distress, psychological interventions such as Cognitive Behavioural Therapy (CBT) can be helpful when adapted to the child or young person’s presentation and phase of illness.
Consequently, a GP may enact a referral 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 an individual with either condition also receives a full medical evaluation.
Whilst UK clinical guidelines for PANS and PANDAS are being developed, two sets of international, peer-reviewed guidelines have been published. The PANS PANDAS Steering Group refer all clinicians to these guidelines until UK guidelines are published.
Where can I find more information?
Browse our resources, join our support groups or visit our comprehensive Frequently Asked Questions page to find answers to your questions about medical support, treatment and educational provision for individuals affected by PANS and PANDAS.
