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‘I’m worried that when I come round from an epileptic fit I won’t remember having my daughter with me ... I’d be afraid of someone taking her’

 

Trying times: Dawn Cairns has suffered from epilepsy since the age of two
Trying times: Dawn Cairns has suffered from epilepsy since the age of two

For most young mums, popping into town to do some shopping and stopping off for tea or an ice-cream is all part and parcel of being a parent. But for Lisburn woman Dawn Cairns, a trip out with her four-year-old daughter Yasmin is only possible if she is accompanied by her husband John.

The 37-year-old suffers from temporal lobe and generalised epilepsy which, in a bad month, can see her suffer up to 15 seizures, which are preceded by just a five-to-ten-second warning.

After each one, she can feel very confused and disorientated, and it is this aspect which frightens her most about being out on her own with her young daughter.

"I'm worried that when I come round, I won't remember having her with me. I'd be afraid of somebody taking her," she said.

However, Dawn has been thrown a lifeline after being told by her consultant just last week that he is recommending her for a procedure known as vagus nerve stimulation.

This involves a stimulator or pulse generator being inserted under the skin and connected to the vagus nerve in the neck.

Dawn explains: "You have a wrist band with a magnet in it and when you feel a seizure coming on, you wave your wrist over the implant, and that sends signals to your brain and tells your body not to go into seizure.

"I was speaking to a girl I met on Facebook and she was having 80 fits a month, but since she got the implant, they are down to just two."

The couple are aware that the procedure, generally reserved for patients whose seizures cannot be controlled with medication, works better for some people than for others, and Dawn has several more appointments before she will be given a date for her surgery. But they are hopeful and excited.

"It would make such a big difference to me," she says.

Dawn has beaten the odds before. Having been told she was unable to conceive because of her epilepsy, she was delighted when she found out she was expecting her daughter.

"I was working in a shop as a volunteer when I got the call from my doctor telling me I was pregnant. I kept telling him I couldn't be because we'd been told before it wasn't possible.

"So I went out and bought four test kits and every one of them was positive! That was fantastic."

Dawn and John, who have been together for 16 years and married for six, would ultimately like to have a brother or sister for Yasmin, but are waiting until Dawn undergoes the implant procedure before embarking on that next step.

Dawn was just two years old when she had her first epileptic fit - a grand mal seizure in which the body jerks violently.

Her mum Jean remembers it vividly. "It was horrendous. She was out in the back garden and her wee friend came in and said Dawn wouldn't talk to her any more," she says.

Dawn with her daughter Yasmin and husband John
Dawn with her daughter Yasmin and husband John

"I went out and her face was blue and her eyes had rolled back into her head. I had no idea what it was. I thought it was a brain tumour.

"I remember running to the neighbours with her in my arms and the friend's daddy took us to the hospital."

However, it was two epileptic episodes later before Dawn was diagnosed and put on medication, all before she started primary school.

Managing Dawn's epilepsy became a way of life for the family.

"At the start, we were phoning the ambulance every time she had a bad seizure, but then they suggested we could give her the Valium at home if we wanted to. It would have brought her out of the seizure," says Jean.

One day in particular is etched in Jean's memory, when both Dawn, then aged 11, and her sister Jill (6) ended up in adjoining beds in the City Hospital, both being treated for epilepsy.

Jean says: "Dawn had taken 13 grand mal seizures in one day and Jill had 82 absences (when the person loses consciousness for a few seconds) the same day.

"They were in hospital for a week."

Jill eventually grew out of her epilepsy and the family is still hopeful that Dawn could, too, as medical opinion says the chances of doing so are higher if the patient has had the condition since childhood.

Dawn's seizures are usually preceded by a warning sign, which she describes as a "weird, tingly feeling" in her head.

"I just go and sit down and cover my face. I don't like the light or noise," she says.

"The small seizures only last a couple of seconds and Yasmin has started to come and hold my hand when I'm having one. Thankfully, I haven't had a grand mal in about two years now.

"Dr John Craig in the Royal has been able to stabilise me, which is really good, but there are times when it's worse, such as coming up to my period, or when I get stressed or excited.

"There have been a couple of times when I have gone into fits and I have walked out of the house and come back about 20 minutes later without knowing where I have been.

"About seven years ago, I was sent to London for an operation, but they couldn't do anything for me when they found the epilepsy was on both sides of my brain."

Although not suffering from photosensitive epilepsy - seizures triggered by flashing lights or contrasting light and dark patterns - Dawn avoids bright, flashing lights, as well as loud music, as they can make her feel unwell.

She said: "I can't go to the cinema, but that doesn't really bother me, and when John and I first started going out, we went to a few nightclubs, but we had to stop because the lights and the noise were affecting me."

The couple recently took Yasmin to see Santa at the switching on of the Christmas lights in Lisburn and the young mum had to take the extra precaution of putting up her hood and keeping her eyes fixed on the ground.

The town's flashing Christmas lights have recently been criticised for their possible effects on epileptics, but Dr Jim Morrow (above), a retired consultant neurologist, who is chairman of Epilepsy Action NI, says he had never in his entire career come across a case of a seizure being triggered by flashing Christmas lights.

"Photosensitivity is rare. Only three per cent of people with epilepsy have it," he said. "The lights would need to be very intense and you would need to be very focused on them to provoke epilepsy.

"What would commonly be more problematic would be strobe lighting in discos or flickering lights coming through trees if you are a passenger in a car.

"There are things much more likely to provoke a seizure than Christmas lights, such as stress, lack of sleep and alcohol, so in that sense Christmas can be a difficult time of year for people with epilepsy."

However, he says the advice for anyone worried about the lights at Christmas would be not to look directly at them.

"The best thing is to put your hand over one eye to let the light get to both retinas," he added.

Although Dawn is unable to work because of her condition, she attends the Atlas Women's Centre in Lisburn, where she is currently enrolled in English classes and has volunteered to do some cleaning.

She has also helped out at the town's PDSA veterinary charity shop, and enjoys the monthly Coffee and Chat group meetings organised by Epilepsy Action NI, where she helps new members feel welcome.

The young mum says she feels lucky to have such a supportive family.

John, who works at JP Corry builders in the town, decided to reduce his hours after Yasmin was born, so he could be there in case his family needed him.

He says: "We had a big discussion about it. I was doing about 50 hours a week, including overtime, but I am down to 30 now.

"I start early and it means I can be home for Yasmin getting out of school.

"I have told Dawn I am there for her whenever she needs me."

John has had to learn quickly since meeting Dawn. He recalls driving home after one of their dates when Dawn suddenly shouted out, 'Mummy, mummy'.

John said: "Her mum had told me those were the words she used when she was going into a big fit, so I drove up to a lay-by.

"I had a pack of darts sitting in the car and Dawn had lifted them and had jagged my leg with one of them.

"I stopped the car and just comforted her and held her hand, like her mum had told me to."


He adds: "Dawn has a five to ten second warning that she is going to have an attack and when Yasmin was a baby and she felt one coming on, she would have asked me to take her quickly or she would have put her in a safe place, like the travel cot.

"She is never on her own very often because she can be very confused when she comes out of a fit."

And now little Yasmin has joined Dawn's army of devoted helpers.

John says: "When Dawn has a seizure and I go to help, Yasmin knows what's happening and she pushes me out of the way and says, 'Daddy, I'll look after Mummy'!"

For more information, visit Epilepsy Action's website at www.epilepsy.org.uk

A serious neurological condition affecting the brain

Epilepsy is one of the most common serious neurological conditions in the world. Around 600,000 people in the UK - almost 1 in 100 - are affected. Around 87 people are diagnosed with epilepsy in the UK every day.

In Northern Ireland, approximately 20,000 people have epilepsy, a condition that affects the brain. When someone has epilepsy, it means they have a tendency to have epileptic seizures.

Some people may have seizures for a limited time, after which they stop occurring, while for others epilepsy is a life-long condition.

A seizure happens when there is a sudden burst of intense electrical activity in the brain, causing a temporary disruption to the way the brain normally works.

What causes epilepsy?

In more than half of patients with epilepsy, doctors don't know what is causing it. Sometimes, a clear cause can be found, and can include:

Stroke.

A brain infection, such as meningitis.

Severe head injury.

Problems during birth which caused the baby to get less oxygen.

Tests, which can help rule out any other conditions that could be causing seizures, can include blood tests, an EEG (recording of the brainwaves) and brain scans.

Common seizure triggers

Not taking epilepsy medicine as prescribed.

Feeling tired and not sleeping well.

Stress.

Alcohol and recreational drugs.

Flashing or flickering lights.

Monthly periods.

Missing meals.

Having an illness which causes a high temperature.

The main treatment is anti-epileptic drugs or AEDs, which don't cure epilepsy, but help to stop or reduce the number of seizures.

If epilepsy medicine doesn't work well, doctors might suggest other types of treatment, such as brain surgery, another type of surgery called vagus nerve stimulation, and a special diet called the ketogenic diet, which is sometimes used for children.

You can reach out to Epilepsy Action Northern Ireland for help. The charity raises awareness and increases understanding of epilepsy, campaigns for help for those with the condition, offers support through its network of volunteers, branches and groups, organises events for patients and professionals, and holds local fundraising events. For more information, visit Epilepsy Action's website at www.epilepsy.org.uk or telephone the Epilepsy Action freephone Helpline on 0808 800 5050.

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