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PANS PANDAS UK

PANS PANDAS UK are a registered charity offering support and education in relation to the conditions PANS (Paediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infections).  

PANS and PANDAS are a set of neuropsychiatric conditions which are triggered by a misdirected immune response, resulting in the inflammation of the brain.

PANS (Paediatric Acute-onset Neuropsychiatric Syndrome)

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

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.

  • Dilated pupils are also widely reported in children with PANS or PANDAS

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 an inflammation of a child's brain.  ​

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.​

Diagnostic Criteria

In addition to OCD and/or tics, children can also experience a range of symptoms from the following list:​

  • Enuresis and/or urinary frequency

  • Insomnia and/or sleep disturbances

  • Food restrictions

  • Anxiety (heightened anxiety, separation anxiety, irrational fears, panic episodes)

  • 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).
  • Whilst not part of the diagnostic criteria, in approximately 25% of cases there have been reports of psychosis and/or hallucinations.

  • Dilated pupils are also widely reported in children with PANS or PANDAS

Who to contact

Contact Name
Vicky Burford
Contact Position
Charity Secretary
Telephone
07808 764750
E-mail
secretary@panspandasuk.org
Website
My service's website
Twitter
@PandasPans
Facebook
My service's public facebook page
Notes

Our facebook support group for parents or carers looking after a child affected by the conditions can be accessed here

Our facebook support group for adults affected by the conditions can be accessed here.  

Other Details

Availability

Referral required
No
Last updated: 13 Oct 2020
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