When Aoife Hartnett, now 14, collapsed whilst bouncing on the trampoline with her friends one afternoon after school aged 11, they simply thought she was ‘playing dead’ – until she started foaming at the mouth.
She was placed in an induced coma at hospital and diagnosed with Hashimoto Encephalopathy, a type of encephalitis, which is a rare condition that sees the immune system mistakenly attack the body’s own cells.
After 22 days, she regained consciousness, but, a world away from the sociable, happy girl she had been, she would hallucinate, erupt in angry outbursts and lost her sense of empathy.
Now Aoife, still suffers with seizures but is improving day-by-day.
Her mum Louise Carolan, 49, from Dublin, Ireland, said: ‘Aoife was bright and happy – she was a perfect little girl.
‘But it was like her personality changed, and what I noticed most was that she lacked empathy.
‘Before, she would give money to homeless people on the street, but that had gone. If she hurt her brothers, it was like she didn’t care.
‘She became very aggressive physically. I got a few thumps, and I couldn’t leave her alone with her brothers in case she became angry.
‘She was confused and angry, and would get agitated by certain things, like the ticking of a clock. We’re an empathetic family so I couldn’t understand it and found it really hard to deal with.’
In the build-up to Aoife’s hospitalisation in September 2016, Louise explained how the schoolgirl had seemed more tired than usual on a family holiday to Fuengirola in Spain.
After returning, she also started complaining of an earache and upset tummy.
Then, around a week later, she was playing on a trampoline with her next-door neighbours when she collapsed.
Louise explained: ‘My neighbour heard the kids saying, “Aoife’s playing dead”. He saw she was out for the count and foaming at the mouth.
‘There was screaming at my front door, so I ran to her and saw that she was blue and had stopped breathing. It felt like she wasn’t breathing for a good few minutes. I was hysterical.’
Aoife was raced to Temple Street Children’s University Hospital in Dublin with her father, while Louise followed behind
She was connected to a breathing machine due to the severity of the seizures she’d started having when she arrived at the hospital.
At first, doctors were baffled as to what was causing Aoife’s symptoms, then, a series of MRI scans and a lumbar puncture – which takes a sample of fluid from the spine – found she had some swelling on the brain.
To give her body a chance to recover, she was placed into an induced coma, and was officially diagnosed with Hashimoto Encephalopathy whilst unconscious.
According to the charity The Encephalitis Society, it can affect all age groups, but is most common in females of around 50.
Thought to be an autoimmune condition, the exact cause is unknown, and symptoms include drowsiness, psychiatric disturbances and jerky movements, some of which may be seizures.
Medics treated Aoife with a course of steroids and a blood plasma exchange – where plasma is removed from the blood and replaced – before bringing her round after 22 days.
Coming to, she was unable to walk, talk, or even recognise her family.
Louise said: ‘She would look at us, but she was vacant. There was a deadness in her eyes.
‘She started to hallucinate and would talk to the machines in the ward. She even told us she could see her grandad, who had died four years before she was born.
‘I would try and console her, but then sometimes she would look at me like, ‘Who are you?’ It was five or six days before she recognised us.
“We were told she would have to relearn everything, including how to sit up on her own. She was having to wear nappies and be fed via a tube.’
Slowly, Louise began to see glimmers of determination from Aoife, who retaught herself to sit up, and walk to the bathroom.
Finally, after 12 weeks, Aoife, who also had physiotherapy to help her grow stronger, was allowed home.
But sadly, her nightmare was far from over, as it became clear that despite having medication she was still suffering two to three seizures a week, as well as dealing with personality changes.
In January, Aoife, then on a high dose of steroids and anti-seizure medication, was able to return to school, where she was in her final year of primary school, gradually increasing her hours with a teaching assistant with her at all times.
Explaining how different her daughter’s behaviour now was, Louise continued: ‘She would randomly scream out loud in the classroom, or tell the teachers to f*** off. She’d call teachers fat and ugly.
‘Whatever came into her head would come out of her mouth – she just had no filter.
‘Before she got ill it was really unusual to hear her swear and she would immediately cover her mouth if she said something and would feel really bad about it.
‘We would be in public places, like on the bus, and she would shout at me to f*** off. I would feel like everybody was judging us.
‘I would find myself in the position of trying to act normally, but also wanting to shout to the world, ‘You haven’t got a clue. Don’t you realise what this child has been through?’
‘There were times when I’d come home, get into the shower so no-one could see or hear me and just cry my eyes out.’
Consulting a psychiatrist, Louise was told that Aoife would need to rebuild all the learnt behaviours she had picked up as a child, such as feeling empathy and social etiquette, knowing what is appropriate to say in public.
Now, despite still struggling with school, finding spelling and maths hard, and getting exhausted if she has to concentrate for more than 20 minutes, she is slowly making progress – although, since April 2018, she has been suffering with a different type of seizure brought on by anxiety.
These happen once or twice a day where she will shake uncontrollably but be conscious and aware of what’s happening, and is usually able to get them under control herself.
She still takes 22 tablets a day to try and keep her seizures under control and these have now reduced to once or twice a month.
‘All of that is slowly getting better. We hope it will continue to do so,’ Louise added.
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