'Seeing our son having a seizure is traumatic'
BBCThe parents of a young boy who experiences up to 50 seizures a day have described "living on the edge" as they call for better awareness about epilepsy.
Three-year-old Barnaby from Lymington in Hampshire was diagnosed with the condition at just eight weeks, when he had infantile spasms.
He has taken part in a new study that aims to identify symptoms and features of early-onset epilepsy in young children that can predict conditions - such as ADHD, autism and learning disabilities - that develop later in life.
Barnaby's mum Charlotte said the three-year-old having a seizure was "the most traumatic thing to ever watch".
"Those really bad seizures that he has had stick with you throughout the whole time.
"You just have to try to remain as calm as possible, but you're inside just always living on the edge," said Charlotte.
His seizures cause regular injuries - he has chipped his tooth and split his lips multiple times.
Barnaby's seizures caused damage to his brain, and MRI scans showed that he has focal cortical dysplasia (FCD) in his left frontal lobe, which is an area of his brain that has not formed properly.
It has left Barnaby with weakness on the right side of his body, affecting his balance and mobility.
This means he has to take five different types of medication every day, which Charlotte says "takes its toll" on the three-year-old.
His dad, Kieran, said: "There's been a lot of ups and downs and it's been a different experience to a normal parent - because as a normal parent you see them hitting all these milestones, whereas we've not really had that."
Barnaby experiences atonic drop seizures, causing a loss of muscle tone which made him go limp.
Charlotte said: "Before anything I always just thought of seizures as like a shaking and jerking seizure.
"There's so much stigma around epilepsy and seizures but actually there's hundreds of different types of seizures."
Barnaby is due to have surgery this summer in the hope he can become seizure free.
About 64,000 babies, children and young people under 18 years old in the UK have epilepsy.
The new research hopes to remove some of the uncertainty for parents and the thousands of children in the UK who are diagnosed with epilepsy before they are two-years-old.
Researchers at Kings College London are aiming to identify any connections between epilepsy in babies under two, and their childhood development.
Dr Charlotte Tye said focusing on seizure control among young children with epilepsy may delay the diagnosis of behavioural or learning differences.
"Before interventions can be tailored to young children with epilepsy, it is crucial to identify features of early development that can predict later neurodevelopmental outcomes," she said.
