THERE are about 54,000 people with epilepsy in Scotland, a condition that affects one in 100.

It was just a couple of months before Callum Wilson’s fourth birthday when he had his first seizure.

Out of the blue the toddler fell to the ground, then that first seizure was followed by many more.

He was soon diagnosed with epilepsy and life for him and his family became stressful days and nights, peppered with attacks.

“Callum’s seizures were poorly controlled with lots of different medicines.

He was on about three or four different medicines at any time,” says his mum Colleen, 47, from Stewartfield, East Kilbride.

“While they gave some control of some of the seizures, his life was dictated by daily seizures. He had to wear a head guard during the day, so that was limiting how he was getting on at school, going out and about, having to build in an extra layer of consideration.

“Sometimes he just wasn’t well enough to go out. So that would completely limit the things he was doing and we were as a family.”

By the time Callum’s younger sister Kirsty was born, he had been unwell for a year and a half.

Callum has myoclonic asatic epilepsy, affecting one to two out of 100 children with epilepsy.

The team of epilepsy specialists at Yorkhill were continually monitoring Callum, a pupil at Sanderson High School in East Kilbride, trying to find the best medication and therapies to ease his symptoms.

“For a year Callum was on the ketogenic diet, higher in fats and lower in carbohydrates than a typical diet, and went from having drop seizures where he is falling 10 times a day and hurting his head, to within a week those seizures were reduced to one a day,” says Colleen.

It was the fitting of a vagus nerve stimulation or VNS that transformed the lives of not just Callum but the rest of his family, including Colleen, husband Alex and their daughter Kirsty.

The small device, similar to a pace-maker, is implanted under the skin. It connects to a thin wire which stimulates the vagus nerve in the person’s neck at regular times throughout the day. This sends impulses to the brain, which helps prevent electrical activity that causes seizures.

“We have found that his daytime seizures have maybe halved. Rather than having seizures where he falls to the floor and convulses every day, a lot of those have gone. That has freed up a lot of what he does during the day as there is less of a worry,” explains Colleen, who works in a carers’ centre.

“There has certainly been a reduction in seizures. We were never promised full seizure control but we have found that they have gone down. He still has a lot of seizures in his sleep during the night and those are the ones we would love to get rid of.”

Until those night-time seizures stop, Callum will always be troubled by interrupted sleep.

“All of the time he’s going to school tired or he’s having a seizure early in the morning and it means he is missing going to school,” adds Colleen.

“School has been very accommodating about when he comes in. his learning through the day is disrupted. If you don’t get a good sleep … it has an impact on everything he does and everyone else. We have to be up during the night dealing with seizures and reassuring him, to get him back to sleep.”

Now Colleen is inviting people with epilepsy to come along to an interactive workshop on October 3 to help them seize control of their condition.

Seize Control – Your Route to Better Epilepsy Treatment at the William Quarrier Scottish Epilepsy Centre in Glasgow is part of a series of events taking place across the UK to raise awareness of available treatments for epilepsy beyond medication.

There will be the chance to hear from expert speakers, including surgeons and consultants from the Queen Elizabeth University Hospital and the Royal Hospital for Children, Glasgow, talk about epilepsy treatments, including VNS, brain surgery, deep brain stimulation and the ketogenic diet.

Colleen will also speak about her family’s experiences trying to treat Callum’s epilepsy.

“I want to encourage families that are in a similar situation to us,” she says. “I hope this event will help people consider their options.”

Collaboratively organised in Glasgow by UK charity Epilepsy Action and Scottish charity Epilepsy Connections, the event will have a programme of children and young people’s activities, from 10am.

“We have put together a great programme of expert speakers and the William Quarrier Scottish Epilepsy Centre is the perfect venue. I’d encourage anyone who wants to find out more about epilepsy treatments and local services to book their place as soon as possible,” says Sam Whitmore, training and development manager at Epilepsy Connections.

Visit www.epilepsy.org.uk/glasgow