Don’t turn down help. [my son] first went to respite carers when he was 17. In Oxfordshire, it’s not very good, the respite care, but insist on family and friends getting to know the child. Insist on that, accept any offers of help. Make sure that you get free time for yourself, for your other members of the family. It’s becoming impossible to go on holiday now because [son] just won’t co-operate. He just wants to go home, he plays up something awful. We did try to take him on holiday every year and we were spending hundreds of pounds on having a really miserable time.

So make sure your child knows as many people as he can possibly, or she can possibly meet, like a normal child really. Don’t try and treat them like the like they’re with kid gloves really, which I did. You know I treated him as he was this precious thing, which hasn’t done him or me any good really in the end, because he won’t go to anybody else.

I understand that [my son], who is 22, and I first noticed that [my son] was, that there was something wrong with [my son] when he 14 months old. Hed had a very bad infection and was running a temperature and I remember going into his room and seeing him lying very stiff, with his eyes rolled up. I wasn’t particularly alarmed because I didn’t really know what was happening.

Soon after that, a month later, we were on holiday and my mother-law noticed that [my son] was going stiff and his eyes were rolling up, and then he would shake himself and then walk off. She thought that was particularly unusual. Being a first time parent I didn’t really notice it. But when we came back from holiday we took him to our GP and told her what was happening, and she had, got us an appointment quite quickly to the [hospital] for tests. And by that time he was going stiff, rolling his eyes and then he was falling to the floor. We went to, when we went to the [hospital] we were, we had to go to the Hospital and he had an EEG and we were told he had epilepsy.

[My son] started going to school at 3. He went to a special needs nursery but he, the seizure activity was still the same. He tried various different drugs, latmotrigine, nitrazepam. Nitrazepam was quite a good drug because that made him seizure free from the ages of 6 to 7, but he started to get his second teeth at the age of 8 and then it all started again. Hes been on every medication on the, on the chart. At the age of, of 15 he started to get very aggressive and he was put on vigabatrin and Tegretol and, but the vigabatrin, every time we tried to increase it to stop his seizures from happening, it just made him more aggressive. Prior to that he was having just absence seizures and myoclonic jerks.

After the age of 15 he started to have tonic-clonic seizures, what used to be called grand mal attacks, and they increased in severity. At the ages, at the age of 17 he had another EEG and he was diagnosed with Lennox-Gastaut syndrome. This is when he, when he had periods of non-convulsive stasis seizures, so he was having seizures all the time. And at the age of 18 he went on to topirimate which made him very poorly. He, he became really inactive and lost a lot of weight. So we came off topirimate and just was on Tegretol, and he was on tiagabine but his seizures didn’t really help. And between the ages of 18 and 21 he, he became virtually inactive. He didn’t do anything, didn’t say anything, didn’t want to eat and slowly went down hill.

At the end of the, of 19, end of 2000 he presented with ulcerative colitis so he became even more ill than he was before. And so this year we tried him on levetiracetam (Keppra) and that’s improved his behaviour and how he feels about himself a lot. He can talk a lot better now and his seizures don’t seem to be so out of control. Hes also still taking Tegretol. I put him on, on the gluten free and dairy free diet and that seems to, also to be helping his seizures at the moment.

Well I sort of have a global spirituality. I’m a bit sort of New Age but I believe in Buddhism and Hinduism and things like that. And I believe that [my son] been put on this earth to teach me a lesson I have to learn. I’m not a conventional European person (laughs). I think my belief in this sort of, I believe that my spirituality helps me keep going really. I’m not sure if I was a Christian and, it would be different. I think within the Christian communities they have to rely on each other and with somebody with epilepsy you have to rely on yourself. And that’s what I’ve learnt over the years is self-reliance, and using my own intuition. If you feel that something is going drastically wrong, go to the doctor straight away, don’t wait. If you’re found out to not be right that’s fair enough, but your child depends on it.