Epilepsy diagnosis signals all change for Farnham family | News

When Emma Richards saw her four-year-old son fall to the floor and not get up she knew something was very wrong.

In that moment life as she knew it changed as Oscar had experienced the first of what was to be many epileptic seizures.

Now aged eight, his condition is stable thanks to the clinicians at Royal Surrey NHS Foundation Trust.

She is sharing her story to raise awareness of the condition as part of International Epilepsy Awareness Day (14 February). 

Oscar’s mum, Emma, said: “I’d taken Oscar to our GP because he’d had a high temperature that wasn’t going away and I was worried. The GP checked Oscar over and said he was OK and he did seem to be on the mend by then.

“An hour later, Oscar was playing in the garden with his sisters, when he suddenly fell over and didn’t get up again. I rushed out and knew there was something wrong straightaway; Oscar’s eyes were rolling back in his head and he didn’t look right. I was absolutely terrified and called an ambulance, which came really quickly.”

Oscar was rushed to Royal Surrey where he experienced several more seizures. Emma of Farnham, Surrey, said: “Oscar stayed in hospital for five days and it was a traumatic time for us. His seizures were intense, one lasted over seven minutes and I just thought I’d lost him then. I was beside myself. That experience just changes you as a person.”   

After being admitted to hospital, Oscar was given CT scans and a lumbar puncture and the doctors diagnosed viral meningitis. Emma said: “It’s not clear if the meningitis triggered Oscar’s epilepsy or if this was something that he was born with, but we knew that our life had suddenly changed.

“It was a very frightening time and it was difficult to come to terms with what was happening. I’m an anxious parent anyway, so dealing with the ongoing worry is so hard, but I can’t praise the staff at Royal Surrey highly enough. The Paediatric Team were so kind to me, as well as being good with Oscar and the Children’s Epilepsy Team are just amazing.

“The epilepsy nurses have been incredibly supportive with us and are always quick to respond to any questions. I keep a diary of Oscar’s seizures and email the team after he’s had one and they always come back to me with reassurance and advice. They’ve become like friends to us.

“When Oscar started school, he was having seizures every day and although four years later that isn’t the case, his seizures are not totally under control. His consultant is currently changing his medication so we’re hoping things will improve.”

Royal Surrey’s Children and Young Adults Epilepsy Team cares for around 200 patients, aged from 0 to 16. The team supports young patients and their families from diagnosis to discharge and are the first point of contact for parents and young patients who are worried about changes to seizures or their frequency. One in every 220 children in the UK will have a diagnosis of epilepsy.

Natalie Baines and Stephanie Lawrence are Children’s Epilepsy Nurse Specialists at the Trust. Stephanie said: “Every child’s seizures are different so it’s important for whoever is looking after the child to know how the seizures present themselves so they can make sure the child is safe and support them appropriately. We want to empower our patients and their families so they know what to do in emergency situations and can help them so they don’t have to be admitted to hospital each time.

“Part of our role is educating teachers, nursery staff, carers, grandparents and parents so they can help children with epilepsy lead a normal life. There’s a danger that if children are prevented from doing the same activities as other kids for fear of triggering a seizure this can impact on confidence, self-esteem and mental health.” 

Natalie said: “The Children’s Epilepsy Team are here to support, offering reassurance and advice for our parents and families. Each child will be different and perhaps 60 to 70% of children will be seizure free on one medication but there are young patients where this isn’t the case and they and their families need more support. We are a listening ear, because that’s what they need at that time and it’s what we’re here for.

“Just knowing that we are passing on our knowledge to make families feel more comfortable with the condition is always rewarding.”

 

Photo credit: Ian Jones Photography Ltd. Photo shows Oscar and Natalie meeting Her Royal Highness The Duchess of Cornwall during a visit to Clarence House.