The first one occurred when she was just 11 months old. Initially admitted to hospital with uncontrollable temperatures and lethargy, she then developed seizures, a rash and cold extremities. The diagnosis wasn’t clear but after three days, she started recovering and returned home. Apart from having to relearn to crawl, within a month there were no signs that she had been ill at all.
Then, when she was 13, Kate experienced her second and much more severe ANE episode. Her initial flu-like symptoms worsened and became so unusual that she was admitted to hospital where she presented with confusion, Bell’s palsy, slurred speech and unsteadiness. She was having minor seizures, vomiting and one pupil was much larger than the other. An MRI showed she had lesions all over her brain. The Neurologist diagnosed it as ANE.
Kate was unable to use her hands and needed support to walk. She spoke like she was intoxicated, was hallucinating and her emotions, including inhibitions, were haywire. Understandably, this was an extremely scary and overwhelming time for the family.
“Our time in hospital was a blur. There were so many specialists coming in and out of her room and we didn’t understand the medical terms or who we needed to speak to about what. There was so much paperwork and so much information to take in. We were in shock,” her mother, Kim, recounted.