Guest post from Louise, whose son Daniel is 10 years old and has focal epilepsy. This means that he has seizures, most of which happen at night. Louise is a Face 2 Face befriender in Coventry, here is their story.
Daniel started showing signs of epilepsy when he was three years old. I remember reading him a bedtime story and I noticed that his mouth started twitching and he was dribbling. He became unresponsive and my husband and I didn’t know what to do. We had never seen anything like it before.
Luckily, it only lasted a few moments but it scared us. I took him to our GP who referred us to see a paediatrician, who didn’t think there was anything to be worried about.
Soon after Daniel had a major seizure so we rushed him to hospital and six hours later he was still fitting. I was terrified and it was one of the worst nights of my life. The seizures finally stopped and after more tests Daniel was diagnosed with epilepsy.
At first, it was difficult to explain to family and friends. Everyone reacted differently.
I felt we weren’t given enough medical advice and we were left to research Daniel’s condition on our own. As a mum you want to have all the answers and it’s hard when you don’t – it leaves you feeling guilty. All I needed was to speak to someone who wasn’t involved but knew what it was like.
Daniel’s seizures continued and were hard to control. When they start the first thing that happens is he loses the ability to talk. It’s scary because he can’t even tell you one is coming on. So we came up with a solution – we put cow bells around the house which he can ring if he feels something is wrong. Daniel knows that the bells are not toys and only uses them when he needs to.
Daniel also has dyspraxia and over flexible joints. Which helps explain why he has struggled with school over the years. Recently, an educational psychologist suggested that Daniel might be autistic too – which came as a big shock for us.
The school he is at now is supportive and most importantly Daniel is happy there. He has a good consultant and our family is learning to come to terms with all the different conditions he has.
It can be daunting having a child with additional needs but we love being parents.
Daniel is a kind, gentle boy who is well liked. He’s helpful to everyone and never ceases to amaze me. He sees the world in a beautiful and special way.
Louise supports parents as part of our new Face 2 Face service in Coventry, which launches today! Face 2 Face provides free emotional support for parents of disabled children, from other parents with similar experience.
Another befriender in Coventry, Donna, has also written a blog for us about her story. Read Donna’s story.