The Brain Charity

Since the outbreak of Covid-19, awareness around mental health issues has been increasing, however for some families with children affected by PANS (or PANDAS) this awareness is not enough. 

What are PANS and PANDAS?

PANS and PANDAS are immune mediated conditions which present with 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 group 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.

Misdiagnosis is common

Due to a lack of awareness, these children are often misdiagnosed with late onset autism, 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.

These conditions are characterised by the sudden onset of obsessive compulsive disorder (OCD), tics (unusual body jerking and repetitive movements) or eating restrictions, along with two or more of the following symptoms to an equally severe degree.

• 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).
• Insomnia and/or Sleep disturbances
• Enuresis and/or Urinary frequency

Whilst not strictly part of the diagnostic criteria:

• Psychosis and/or Hallucinations are present in approximately 25% of cases
• Dilated Pupils are also reported by many parents

Charity PANS PANDAS UK can help

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 support families all over the UK dealing with this condition and have a support group on Facebook. Just search PANS PANDAS UK Support Group.

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 visit www.panspandasuk.org or email secretary@panspandasuk.org

The Brain Charity’s SPOTLIGHT ON series highlights the work being carried out to raise awareness of different conditions by charities, groups and individuals.
To submit an article, email communications@thebraincharity.org.uk