Interview EP40

Age at interview: 15

Age at diagnosis: 7

Brief Outline:

Carer's (aged 43), 15 year old daughter was diagnosed with epilepsy in 1995 age 7. She had a Vagal Nerve Stimulator implanted in 2000 at the age of 13. She had neurosurgery in 2002. Current medication' levetiracetam Keppra and Oxcarbamazepine.

Background:

Carer is a customer advisor; married, 2 children.

Discusses some of the problems her daughter had with the magnet.

She had one, and then we had a lot of problems at school with her because the magnet actually wipes computers and credit cards and discs, Cds, anything like that. It de-magnetizes, so they wouldn't let her do any computer lessons or, they stopped all that at school because they were terrified of this magnet and the thing that she had in.

Um, what else was it, on the train, she was sat on the train one day and she was too near some, some equipment and something started going funny. So we had to move her away from it. So there's one or two glitches with it to be careful of.

Explains that VNS did not reduce her daughter's seizures and the generator would soon be removed.

The vagal nerve stimulator didn't really do very much to be honest. It did help initially, again maybe that was because, I don't know it, it just never did seem to do very much at all.

And you say that they've decided that they're going to take the vagal nerve stimulator out?

Yes.

When is that going to be?

I don't know, I'm waiting for an appointment for that. I'm presuming its not going to be before Christmas now, I don't know.

And why have you decided to have that removed?

It was just, they said that six months after the operation [neurosurgery] it would come out, it was kind of um, they didn't want to upset things too much I don't think after having, her having the operation. So they'd leave it six months so it was actually due out in about September. But it's going to be some time.

Tells how teachers reacted to her daughter's seizures.

I didn't rally know what to think. School weren't awfully good with her. One morning they rang me up from school, they'd found her on the floor in the toilet, with her head between the toilet and the wall. And the teacher had rung me up and said 'Me and my colleague have been discussing it and we think she's doing it for attention.'! (laughs). Which I was really amazed at because if she'd been doing it for attention she would have done it where she could have been seen - not!

What was happening at school?  What had the teachers been telling you was happening at school?

They weren't really telling me a lot, they were again making me feel over-protective. I don't think they understood why I was making such a fuss. But it was like, in assembly one morning, because, I suppose because she has a younger sister that I knew what was going on. If it had just been her she wouldn't have been able to tell me because she couldn't remember. Her sister would say to me 'She had quite a bad fit in assembly and they just left her.' They just left her, because everybody was like on the floor cross legged, she'd be standing up and spinning round and they'd just leave her. They wouldn't do anything with her at all and then afterwards she'd be very, very tired and they didn't understand why.