Laura’s story – Wear Purple for Epilepsy Day
Laura and her mum Jackie live in Bordon in Hampshire and have been under the care of Royal Surrey's Children’s Epilepsy Team since Laura started having seizures aged 2.
Now aged 20, Laura has transitioned to being under the care of the Adult Epilepsy Team at the Trust, which is run by Niru Pun, Adult Epilepsy Nurse.
As we mark Wear Purple for Epilepsy Day (26 March) Laura’s mum Jackie reflects on the challenges that a complex epilepsy diagnosis brings.
“Laura was only two when we had the first sign that something was wrong. She had a seizure at home and we called an ambulance, not knowing what it was. She wasn’t admitted to hospital and the paramedics just made sure she was ok and gave us reassurance, but she then had another seizure two weeks later. More seizures quickly followed, happening one after the other.
“For about three months, we seemed to be in and out of Royal Surrey’s paediatric ward all the time and met the amazing Epilepsy Children’s Team and specialist consultant.
“Laura was having lots of different types of seizures and it was difficult to diagnose her problems. While we were in hospital, the consultant suggested attaching a camera to her cot to identify the types of seizures but Laura wasn’t keen to stay in one place, so I ended up following her around the ward with a camera.
“The photos helped the consultant identify the huge variety of seizures she was having and this meant that he was able to see that Laura has a severe form of epilepsy called Lennox-Gastaut Syndrome. This is where someone has lots of different types of seizures, from the ‘tonic seizures’ where people go rigid, to ‘atonic seizures’ where they may suddenly fall down, as well as others. This complex type of epilepsy is also more likely to start before the age of four.
“On some days Laura was having between 60 to 80 seizures a day and because the seizures are so exhausting Laura was sleeping a lot the rest of the time. The damage caused by the seizures also meant that she has learning difficulties, as her brain wasn’t able to develop properly.
“Royal Surrey Children’s Epilepsy Team and now the Adult Epilepsy Team are an important source of support for us. The nurses in the children’s team have become like family over the years, they are just so supportive and kind. It’s not just your child that they look after, they know what effects the epilepsy has on parents who are coping with everything, and they’ll always check to see that you’re ok too.
“There is a lot of trying of different medications with epilepsy to see what will work, and Laura’s syndrome is particularly difficult to treat, so I have done a lot of writing down and monitoring of what’s going on. The sad and most frightening point was when I was told that Lennox-Gastaut Syndrome can be a life limiting condition but I have my faith, which helps me and it’s important to have that inner strength and keep going for Laura.
“I think also that you have to get on with your life and that you’re always stronger than you think. I’ve found it helps me to help other people who may be in a similar situation, so I’m part of a group of parents that came together from Laura’s special school to support each other. We share a lot of practical, down-to-earth information and advice, but we also talk about our experiences and reassure and help each other.”