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PANDAS/PANS UK is a group of parents and medical volunteers focused on raising awareness of Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS) and Pediatric Acute-onset Neuropsychiatric Syndrome (PANS).
·        To raise awareness of PANS/PANDAS in the UK
·        To support the medical community in their quest to treat children suffering from PANS/PANDAS
·        To look for ways to expand the limited medical care available
·        To create opportunities to assist families searching for solutions
·        To ultimately raise funds for much needed research
What is PANS / PANDAS ?
Pediatric Acute-onset Neuropsychiatric Syndrome
Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections
PANS and PANDAS are conditions where a subset of children and adolescents experience an encephalitic-like onset of neuropsychiatric symptoms following exposure to a trigger such as Strep, Pneumonia, Influenza, Mononucleosis, Environmental Factors and other.
In simple terms, antibodies created to fight the infection become misdirected and attack a small area of the brain known as the basal ganglia. This autoimmune reaction results in an acute onset of neuropsychiatric symptoms. Both PANS and PANDAS are clinical diagnoses. PANDAS is a subset of PANS. The initial trigger of PANDAS is Strep however secondary triggers are not relegated to only strep. The initial triggers for PANS can include Influenza, Pneumonia, Mononucleosis, other pathogens, Environmental Factors and other factors.
Awareness of PANS/PANADS does not yet translate into readily available medical or community support resulting in significant difficulties for families of children with PANDAS or PANS.
A normally functioning child may suddenly change overnight following flu or tonsillitis.  Few medical practitioners are familiar with the illness and the relationship between an illness preceding the change in the child is not often realized until some time later.   This often means children are often stuck on long waiting lists to see CAMHs for what is perceived to be a mental illness.  However, what is required is a multi-disciplined team ideally led by a Paediatric Neurologist but encompassing Paediatric Immunology, Psychiatry and Neuro-Psychology.  Sadly due to lack of knowledge many children and treating physicians don’t look beyond the psychiatric symptoms to realize there is a pathological cause.
Many families are unable to find appropriate care, those that manage to put the pieces of the jigsaw together and discover PANS are met with disbelief as the condition is not widely understood or known.  Those lucky few with available resources often seek treatment in the USA and in some instances families are forced to sell their homes in order to fund treatment or as a result of the financial strain of one parent having to stay at home to look after the child.