How it all began

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Heaps of kids in our neighborhood had been crook. Our eldest had been at home with a ‘bug’ for a whole week, which had never happened in his 7 years at school. Matilda had complained of a headache and thrown up once. She was cranky and agitated but we had cancelled her 9th birthday party, so that seemed reasonable. One morning a few days into her illness, Reuben commented that he couldn’t understand what she was saying, and neither could I.

After that it all happened so quickly. Matilda’s eyes reflected fear and her mouth was a locked sound ‘ah-ah-ah’. Something was seriously wrong. We drove quickly to local hospital emergency department. We now know that what I thought were just tummy bug symptoms, were in fact the neurological agitation as the HSV Encephalitis started to take hold and attack her brain.

Matilda was rapidly transferred by ambulance to a larger base hospital. The swift action of the medical team once there in starting her on anti-viral medication, almost as soon as she arrived, probably saved her life and without doubt has led to a much better prognosis for her. An MRI, lumbar puncture rapidly followed. There was loads happening and she appeared to be deteriorating. Over that short period of time she already was losing her ability to answer orientation questions Where are you? What is your name? How old are you? Each garbled answer made us feel waves of nausea.

That night she tossed and turned. In the early hours of the next morning she had a massive seizure. The medical emergency team (MET) raced to her aid – keeping her alive. We found out later that her seizure lasted an hour. It was a long seizure. Her temperature was too high. It felt like it had taken everything they had to control the seizure and the fear was not just mine.

In the early hours of that morning Matilda was transferred to the Lady Cilento Children’s Hospital in Brisbane.

This is how Matilda’s journey with HSV Encephalitis began. Usually it develops over a period of days but, like any other viral infection, depending, for example, upon the immunity of the patient, the disease may take a variable course. Typically it begins with “flu-like” symptoms followed by neurological deterioration, which may include personality and behavioural changes, and perhaps seizures and dysphasia (difficulties in communication). If untreated, it may lead to progressive impairment of consciousness, coma and death. (The Encephalitis Society) It is an extremely rare illness.

Matilda was in hospital for just over 3 months . She was slow to respond to the anti-viral medication and had further seizure activity. She spent longer than expected in the paediatric intensive care unit (PICU). She can only recall the last few weeks of being in hospital.

We are now in the early phases of settling into a routine at home. Matilda attends school for approximately two hours a day and has a steady diet of therapy and tutoring. Fatigue is a major factor and if Matilda becomes too tired this can result in agitation, temper and a great loss of the skills she is working so hard to regain.

In mid-November 2015 she will return to the children’s hospital for another round of assessments and medical review. For now we are muddling through and finding our feet.

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