My perfect daughter, 14, turned into a foul-mouthed stranger after sudden seizure sparked rare brain condition
WHEN Louise Carolan’s 11-year-old daughter suddenly collapsed whilst bouncing on a trampoline, her pals thought she was just “playing dead”.
But Aofie Hartnett had suffered a seizure sparked by a rare brain condition which sees the immune system mistakenly attack the body’s own cells.
The schoolgirl, from Dublin, Ireland, was rushed to hospital where she was placed in an induced coma and diagnosed with Hashimoto Encephalopathy.
After 22 days, she regained consciousness, but was a world away from the sociable, happy girl she had been.
Aoife, now 14, would hallucinate and erupt in angry outbursts, even telling teachers to “f*** off”.
Louise, who also has two sons, Eoghan, 11, and Ronan, 10, 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.”
Foaming at the mouth
Before Aoife was diagnosed in September 2016, Louise said her daughter 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.”
There was screaming at my front door, so I ran to her and saw that she was blue and had stopped breathing
Louise Carolan
Aoife was raced to Temple Street Children’s University Hospital in Dublin with her dad, who is separated from Louise.
She was connected to a breathing machine due to the severity of the seizures she’d started having when she arrived at the hospital.
Louise and her husband were kept in a separate room while Aoife was taken to the resuscitation room in A&E, where around 10 doctors were trying to stop her seizures.
Louise continued: “She’d never had a seizure in her life and they are an incredibly frightening thing to witness.
“She would shake uncontrollably and her pupils would focus on one spot and not move. She would be out for the count.
“Doctors were tracking her brain activity using an electroencephalogram (EEG) which picks up electrical signals and it had registered continual seizures at this point.
“After two hours, I was allowed in to see her in the resuscitation room.
“I just collapsed onto the floor. There were machines everywhere. She was just lying there and, in my eyes, it was like she was just cold. It was absolutely horrific.
“She was on a breathing machine, and every time doctors tried to bring her off it, she would have a seizure.”
Rare condition
At first, doctors were baffled as to what was causing Aoife’s symptoms and were frantically checking to see if she’d had all her vaccinations.
They even phoned Spanish authorities to ask if there had been a virus outbreak over there in case she had picked something up on holiday.
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.
She would look at us, but she was vacant. There was a deadness in her eyes
Louise Carolan
When she came round 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 granddad, 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.”
Determined to get better
Slowly, Louise began to see glimmers of determination from Aoife, who retaught herself to sit up, and walk to the bathroom.
She managed to recall the lyrics to Ed Sheeran’s Thinking Out Loud, which was one of her favourite songs, and sang it to her parents.
Having found being fed via a tube highly distressing, another big step was, six weeks after she was admitted, being able to eat again – first it was mashed potato, mashed carrots and yogurt then small pieces of chicken.
She was also able to take her own medicine, which at that point was 50 pills a day.
After 12 weeks, Aoife – who also had physiotherapy to help her grow stronger – was allowed home.
What is Hashimoto Encephalopathy?
Hashimoto’s encephalopathy (HE) is a rare condition, which is probably of autoimmune origin, according to Sarosh Irani, Associate Professor and Consultant Neurologist, University of Oxford and John Radcliffe Hospital.
Autoimmunity describes disorders in which the immune system mistakenly attacks the body’s own cells.
The clinical presentation of HE (the symptoms) typically reaches its worst within a few weeks and often includes drowsiness, imbalance, episodes which look like strokes, psychiatric disturbances, jerky movements (some of which may be seizures) and sometimes coma.
Currently, the exact cause is unknown although, but it is probably an autoimmune condition.
The thyroid antibodies are thought likely to be a marker of the illness rather than the cause of the problem, and are very common in the general population.
Thyroid function is usually normal.
It’s usually diagnosed by ruling out other conditions including Creutzfeldt-Jacob disease, viral or other antibody-associated forms of encephalitis and dementia such as Alzheimer’s.
Most patients with HE improve with high dose steroids (most often prednisolone). Improvement may be rapid, taking days to weeks, but sometimes can take many months.
For more information on encephalitis visit www.encephalitis.info
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.
Louise said: “I couldn’t leave her on her own for even a couple of minutes in case she had a seizure.
“She was getting regular visits from an occupational therapist, who would ask her to carry out simple tasks like making a cup of tea or a sandwich.
“You could see that she was having to really think about it and would get muddled or forget halfway through what she was meant to be doing.”
In January, Aoife, then on a high dose of steroids and anti-seizure medication, was able to return to 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.
She would randomly scream out loud in the classroom, or tell the teachers to f*** off
Louise Carolan
“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.
“It was like she had no understanding of how to behave in the world. It’s so much better now, but there’s still a little struggle and she still has issues with her memory,” Louise added.
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.
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.
No filter
Explaining how tough it was going back to school, the brave teenager said: “At first, I was totally oblivious to having no filter. I had a friend at school who I called fat – but I had no idea I’d done it.
“My first year in secondary school was a terrible time to make friends. People would say I was faking seizures or ask me if I was the girl with the brain that didn’t work and laugh at me.
“I started to get flashbacks to my time in hospital. I could remember not being able to speak. It was very scary.
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“I’m nervous about the future but I know I’ve come so far. I’m teaching myself how to study again and I’ve joined a theatre group. I’d love to grow up and be a journalist, an actress or a detective.”
Louise added: “I feel like the world is her oyster. I say to her things happen for a reason. I’m still waiting to find out why this happened, but I think sometimes your life takes a turn and it’s how you deal with that.
“My daughter is the most amazing person. Her strength and resilience to wake up every morning, face a world that can be quite cruel and keep pushing ahead is astounding.”
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