Storm had his first seizure when he was three years old. At the time I thought it was a 24 hour sickness bug so I took him to the GP. We had to wait two hours to see the GP, and by the time we saw them Storm had recovered. The GP said Storm had a virus, and that he would be fine in a few days. He was presribed paracetamol. Fast forward a year, and while walking to the shops Storm started to walk strangely and then fell to the floor. I though he was having a silent tantrum in the street and had no idea that he was having a seizure. Fast forward another year and he had more of these experiences. Sometimes the seizures would be close together and sometimes far apart. I called them sicknesses at the time and was unaware that they were seizures.
On Storms 7th birthday I treated him and his friends to a day at the Diggerland Theme Park. There was so much going on with with all the excitement and treats, that I didn't realise that Storm was having a seizure. He got on the Bumper Cars with his Godfather and during the 2 minute ride I watched him hold his head while his face went wierd and twisted. He managed to walk to me, collapsed in my arms and passed out. I thought he was dead. The ambulance took so long to get to the theme park, that by the time it had arrived at hospital, Storm had woken up and started walking around.
I had a breakthrough! A year later we went to Chessington for a last treat before school started in September. While walking around, deciding what ride to get on, Storm complained his head was hurting. He started to walk strangely again, so I decided to leave. I reached the gates of the park and Storm collapsed at my feet. Three Chessington security guards refused to help me to get him somewhere dry and safe as it was raining. Finally after an age, a paraemedic came to our rescue. She got a wheelchair and waited with us until Storm woke up. While we were with her, she mentioned that Storm may be having seizures. She suggested that I should take him to the GP. I took her advice and the GP referred me to Lewisham Hospital where they carried out lots of tests including blood test, heart trace, MRI and telemetry. Storm still doesn't have a confirmed dignosis but the doctors say he has focal seizures.
I found the HOPE group through our great epilepsy nurse. The HOPE group have been welcoming from the very start. I get to talk to other parents and Storm has made lots of new friends. I now know there are many different types of seizures, which I hadn't known before. To me, seizures involved shaking and frothing at the mouth. Storm doesn't shake, his body just falls to the floor, which made me think he was sick, not that he had epilepsy. Storm loves all the things that are dangerous if you have sizures, BMX riding, skateboarding, rafting, sailing, swimming and climbing trees. Storm is a lovely happy boy who likes to cook and make things. His passion is planes and he would love to be a pilot. Storm has the energy of 200 duracell batteries and more!! Storm is now 11 years old. He has ADHD and ASSD and possibly sensory needs. He attends a great SEN School, and in Septemeber he will attend a SEN Secondary School. I'm thrilled about this, as they do lots of sports and outdoor activities which will be great for Storm's development.
Written in 2020