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Libby's story

Libby fell ill on 26 April, 2015. Her mum, Linda, tells her story:

Libby_Michelini.jpg

Libby had gone to watch Game of Thrones at her boyfriend's house, which saved her life.

She'd been ill for a few days, a typical viral infection, and had missed a couple of days of work. The clinic told her just to keep taking the ibuprofen every four hours and sent her home.

That Sunday evening she felt well enough to drive the 15 minutes to her boyfriend's house, to watch their favourite programme. But that day, 26th April 2015, all our lives changed.

Sitting on the couch, she suddenly had a grand mal seizure. Her boyfriend called an ambulance. She had another seizure in the ambulance, and another in the emergency room, despite being given an anti-epileptic drug, so was admitted to Intensive Care. She was given more anti-seizure drugs to try to stop the seizures.

Meanwhile, they hooked her up to an EEG and ran all the usual tests to try to diagnose the problem. She continued to seize despite the various AEDs they tried. After a few days we were told if they couldn't stop the seizures they'd have to put her in an induced coma.

That thought was traumatic.

The neurologists still didn't know the cause, they mentioned encephalitis, meningitis. The seizures continued. They did CT scans, MRIs. They dosed her with antibiotics and Acyclovir. They brought in specialists: stroke, rheumatology, gynecology (to look for teratoma), immunology. They did spinal taps. They sent her blood and serum for analysis. They diagnosed viral encephalitis even though the virus couldn't be identified.

Meanwhile, we were at her bedside, pushing the EEG button to mark every seizure, taking shifts to watch her through the night. She continued to seize but in her brief moments of consciousness recognized us. She murmured a few indistinct words.

After 10 days in Intensive Care she was stable enough to transfer to a neurology step-down unit. Still suffering multiple seizures a day, grand mal and partial. But after a few days of improvement, worse was to come. They took her for another scan but she was uncooperative, combative.

This was the beginning of a new phase, psychosis. She obsessed, ranted and raved, bit and hit, had to be restrained. As if possessed. This phase lasted nearly two weeks.

Autoimmune was mentioned. Antibodies tested for. Nothing was found. In between I was receiving an education, googling encephalitis, the many tests, the acronyms, trying to understand, trying to make sense of what was happening to my daughter, hoping there was a successful outcome to this horror. Eventually the psychosis came to an end.

She received Speech Therapy, OT and PT. It was apparent to me that the physical skills would return but the cognitive skills would take longer. She was released after six weeks in hospital, under 24 hour supervision, still having grand mal seizures.

Finding the right drug regimen took a long time, more than a year, with some nasty side effects - skin problems, double vision, incapacitating vertigo, and of course fatigue and impaired thinking, as well as depression and suicidal thoughts. She developed terrifying drop seizures at one point.

Untold visits to the ER, for skull lacerations, fractured nose, knocking out a tooth, fractured temporal bone, black eyes. She got to the point where she was having on average one grand mal a week. They gave her IVIg, plasmapheresis, steroids.

Let me tell you about our daughter Libby.

Our first born, she spoke at an early age, was insatiably curious, did well in school, was articulate, analytical, creative, and independent. She bought her own car when she was 17 with money she had saved from part-time jobs. She was identified as gifted at school, had a very high IQ, which was fortunate, as it gave her 'cognitive reserve' when her brain suffered damage.

She put her heart and soul into everything she did - studying, life guarding, teaching, pottery. She completed six years of university in four. Nobody worked harder. And now she lives on disability.

She can't work, or drive, or live alone. She's lost most of her friends, her social life, a lot of her memories, and her independence. She has come a long way in two years, she can walk and talk, and has regained her vocabulary, and anyone meeting her wouldn't know anything was wrong (apart from the boxing helmet she wears to protect her face and head).

But her personality has changed, her relationships have changed, the family dynamic has changed. A couple of months ago she had a Vagus Nerve Stimulator implanted, which we hope will improve her quality of life.

She's 32 now, we're hoping she will get back a life without seizures, without injury. An independent life with purpose. She deserves it. She will work at this brain injury like she's worked at everything she's done throughout her life.

I am grateful that she's alive, and that's she's not more disabled. If she hadn't gone to her boyfriend's house to watch Game of Thrones, if she had seized continuously in her house alone, my heart freezes when I think of what could have happened.

If you would like to share your story, please email comms@encephalitis.info

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