Guest Blog: Pans and Pandas International Awareness Day

October 7, 2021

9 OCTOBER 2021 

Since the recent discovery of Long Covid, awareness around the neurological and psychiatric effects of post infectious disorders is increasing, however for some families with children affected by PANS (or PANDAS) awareness is not increasing quickly enough.  PANS and PANDAS are immune-mediated conditions which present with neurological and psychiatric symptoms and the result on the sufferer and the family is catastrophic.  

PANS (Paediatric Acute Onset Neuropsychiatric Syndrome) and PANDAS (Paediatric Auto-Immune Neuropsychiatric Disorder Associated with Streptococcal Infections) are a set of conditions caused by a misdirected immune response to a common condition such as strep throat or chickenpox.  Affected children can become extremely ill overnight and lose the ability to function because antibodies start to attack the brain resulting in a variety of seemingly unrelated symptoms.  

Due to a lack of awareness, these children are often misdiagnosed as having late onset ASD, a psychiatric illness or indeed in many cases are just described as naughty children, when in reality, something as simple as routine antibiotic treatment can resolve all symptoms.  

PANS is characterised by the sudden 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 

PANDAS, a subset of PANS usually starts with an acute onset of obsessive-compulsive disorder (OCD) 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 sinusitis, ear infections or scarlet fever.  In some cases, children can carry the streptococcus bacteria without showing any 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. 

Additionally, 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 reported by many parents  

PANS PANDAS UK is a charity established in 2018 by a small group of parents with children affected by these conditions.  The mission of the charity is to educate the general public and medical professionals so that any doctor seeing a child with these symptoms will consider PANS or PANDAS.  The charity also supports families from all over the UK living with this condition and have a friendly and helpful Facebook support group.  Just search ‘PANS PANDAS UK Support Group’ and click to join.   

PANS PANDAS UK works alongside a Network of Doctors, from all over the UK called the PANS Physicians Network who meet quarterly sharing knowledge and understanding of these complex conditions to ensure treatment of this group of children improves.   

For more information and resources for families, teachers and doctors please visit our website:  www.panspandasuk.org or email secretary@panspandasuk.org