Boy diagnosed with epilepsy aged two 'wants to see change' for young patients

It’s hoped a new study involving children and young people with epilepsy could help Scottish scientists better understand the neurological condition.

Until now trials have only been done with adults, but researchers from Glasgow University and NHS Greater Glasgow and Clyde say working with youngsters and their families could provide them with vital information to improve treatments.

Tommy Wyllie, 12, is the voice of a new campaign aimed at helping young sufferers.

He was diagnosed with focal epilepsy aged two but it took doctors three years of trial and error before they finally found the right drugs to control his seizures.

Tommy’s mum Tania explains that he “manages his symptoms very well, unless he feels unwell”.

Tania told STV News: “It was very scary. You tried to manage everything around him to prevent seizures. At the start, he had one every month. We changed medication, changed doses – it was trial and error for him. Luckily, we reached the right combination and he’s been seizure-free for a year now.

“Every change in meds gave us both hope and fear at the same time. Every seizure felt like a hammer blow that it took a few days to recover from.”

She explains that the condition makes it difficult for Tommy, whose symptoms include headaches, some episodes of déjà vu, increased appetite and emotional outbursts.

“You feel like an island at the start. We didn’t know anybody else who had epilepsy in his school. You feel like you’re on your own.

“You’re trying to manage your family life around it, around hospital appointments, strict bedtimes and avoiding triggers.

“Things like sleepovers are hard. For the other parents to receive all this information, to know what to do and what not to do. Apart from that, everything is fine.”

Tommy was diagnosed with focal epilepsy aged two STV News

Tommy has learned to take his condition in his stride.

He said: “Sometimes it’s hard to concentrate. You grow used to all these symptoms, and they become part of you.

“It’s manageable if you have it long enough, and you get used to it.”

Epilepsy is a condition in which people have bursts of extra electrical activity in the brain, leading to epileptic seizures.

It is the most common neurological condition in childhood, affecting one in 100 children under the age of 17.

In addition to the main symptoms of the disease, which include different types of seizures, children with epilepsy have a significantly increased risk of learning, behavioural, and psychological difficulties. They are also seven times more likely to die during childhood than their peers.

Over the last 30 years, outcomes for youngsters with the condition have not improved.

Currently, up to one third of children with epilepsy continue to have seizures no matter how many treatments are tried.

But a new nationwide study is launching to help improve vital treatments for young people aged 16 and under with epilepsy in Scotland.

Led by the University of Glasgow alongside NHS Greater Glasgow and Clyde, the study is the first of its kind to take a more detailed look at the lives and experiences of children who have epilepsy.

Researchers will work with young people and their families, as well as doctors, to piece together a fuller picture of what living with childhood epilepsy looks like.

This will include assessing how well medications are working, assessing the impact of childhood epilepsy on everyday life and looking at underlying causes.

While the study is only open to children diagnosed after March 1 2025, Tommy is delighted to voice Hamish in an animation explaining epilepsy to young patients.

“I thought I should get involved and decided to help out. That’s the kind of person I am, really,” Tommy said.

“I’d like to see change. It would be a bit more balanced for kids.”

As researchers are keen to understand the impact different medications may have, those who already have an epilepsy diagnosis before 1 March are not eligible to join the study.

Tania added: “When I got the email about this programme, I told Tommy, and he was like, ‘Yes’.

“I was surprised it didn’t exist before. When you read the leaflets for these medications, it is it’s always about adults.

“I really hope this study achieves its scope of reaching lots of families that are living the same type of situation as us, to find the best treatment for each child, but sooner.

“More kids, means more data, more data means more information for a quicker understanding of all the symptoms, effects and outcome of the epilepsy drugs.

“I would love everyone to join in and help in the way they can, with as much info as they can.”

Dr Joe Symonds said: “A lot of the trials have been done only in adults and haven’t involved children and partly because epilepsy is such a complex condition. There are so many different causes that try to work out which medication for part situation is really hard.

“What we have realised is that we need to gather lots of data on what we are doing already and what impact they are having. That’s why we are launching this project.”