Team Year 1 /Year 5’s story
Charlotte & Emilia will each be running 4km (Emilia) and 6km (Charlotte) of a 21
km half marathon in two different teams In support of Pans Pandas UK.
Charlotte became extremely ill following with what we assumed to be influenza in Year 2 aged just 7. After being bedridden with a high temperature for 2 weeks in March '16 she completely changed overnight developing severe neurological symptoms. It took us almost 2 months to obtain a diagnosis for a condition many Doctors had simply not heard of. What we now know is that she had a type of immune-mediated encephalopathy - (inflammation of the brain) following infection.
She has endured countless blood tests, MRI’s, EEG’s, Lumbar Punctures and 4 Intravenous immunoglobulin infusions to correct her immune system and seen in excess of 20 Doctors. She is recovering from her ordeal as the brain takes a long time to heal. We were fortunate as we had the means to get the care she needed but even then it was a tremendous battle.
However, there are many children who are simply not receiving timely and appropriate care to manage what is an extremely frightening condition for parents and children alike.
PANS PANDAS UK was established in 2017 by a small group of parents affected by the illness to ensure timely and accurate diagnosis and to raise the profile of these conditions. They have been instrumental in helping create network of physicians consisting of Neurologists, Immunologists, Paediatricians, Neuro-Psychiatrists and Neuro-Psychologists and the first UK treatment protocol was created in 2018 which is currently pending review by the Royal Colleges.