He was about two and half and we had been out to visit friends locally. On the way home I knew I needed to buy butter so called into the local garage shop. Adam was sleeping in the car seat in the back of the car so I pulled to the side of the forecourt and locked the door while I was in the shop. I could see him the whole time I was in there - about 5 mins.
When I got back to the car he didn't seem right. He was shaking all over. I got in the back of the car and took him out of his car seat and tried to give him a cuddle. At this point I realised something was badly wrong. He wouldn't stop shaking no matter how much I tried to soothe him. I began to panic. I tried to get out of the car but the child locks were on all the doors and I had to put down the window to open the door from the outside.
I think I thought he was dying! It sounds so dramatic now but I can still feel the emotion while i'm typing this and it was over 17 years ago. I know I was screaming for someone to help me. The manager of the garage took me into an office and put him in the recovey position while he called an ambulance. I don't know if the manager had seen someone have a fit before but I am eternally grateful for the way he remained calm and helped us. He took the drama out of the situation and by the time the ambulance came Adam had stopped fitting and I could give him a cuddle.
We were taken to hospital but they thought he had a febrile convulsion. We were sent home the next morning.
Anyway I can't remember the next fit really. I do know that they became more frequent and he had a lot of absences - times when we thought he could be daydreaming but really were small fits. As many people have said I thought a fit always meant falling on the floor and shaking all over. Adam's were very rarely like that. He did have warnings, his right thumb used to twitch and he knew one was coming. If we could get him somewhere quiet we could often ride this out.
After much testing he was given medication. Sometimes it worked straight away. We've had changes of medication over the years and it took a long time to get him stable. He has had several EEG's and numerous stays in hospital after the first few.
I don't think until it happens to you, you realise how scary it is. I am a very calm, capable person but I went to pieces. Even the second and third time I used to rush him to hospital.
He hasn't had a fit for about 8 years! He takes Lamotrigine and Topirimate daily. He is really good at taking tablets and even asks for them now. I have asked if we could try and take him off medication but was told by epilepsy nurse that because it took such a long time to get him stable they wouldn't recommend it as he may never be stable again if he starts taking fits due to reduction in medication. It doesn't affect him - yes we are aware of it. I always let everyone know just in case but its one of those things.
When he was being transferred from the children's hospital to the adult epilepsy team his nurse - who we have known as long as he has had epilepsy - said when they did the EEG there were parts of his brain that weren't as they should be and were very different to a normally developed brain. I can't remember ever being told this when he was a child.
I have found this quite emotional to type, more than I thought I would.
Epilepsy Awareness
The idea behind this is to use Saturdays to spread awareness of the needs, feelings and accomplishments of children and adults with additional needs or autism. Members of Twitter are asked to make awareness posts on Saturdays using the tag #specialsaturday.
Bloggers are asked to write about their experiences of achievement by people who have additional needs or autism on Saturdays. Members of Facebook are asked to write status updates that help spread awareness on Saturdays. Members of both Facebook and Twitter are asked to use the Twibbon that’s designed to spread awareness of the Special Saturday can be found specialsaturday twibbon to add to your profile pictures. Please add your friends and help us spread awareness. People with additional needs have struggled for too long to be accepted as equal members of society and this MUST change.
