Interview EP29

Age at interview: 22

Age at diagnosis: 1

Brief Outline:

Carer (aged 44), of her son aged 22, who was diagnosed with epilepsy in 1982, at 16 months of age. Severe uncontrolled epilepsy and autism, symptoms of Lennox-Gastaut Syndrome, diagnosed in 1997. Has tried several different drugs, and ketogenic diet as a child. Currently on a gluten free and dairy free diet. Current medication' levetiracetam (Keppra) and carbamazepine (Tegretol).

Background:

Full time carer, married, 2 adult children.

Explains what alerted her to a problem in her 14-month-old son.

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. He'd 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-in-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. 

Explains that her son's seizures are a symptom of a more serious condition.

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. 

Did you get much information from the doctors and consultant? 

Not really because Lennox-Gastaut syndrome involves quite a, a few different things like autism, Tourette's syndrome, which [Son name] had periods of... and the child looks like he's, like a demon possessed at some times. Very hyperactive, with the seizures as well, and the school thought he was a very badly behaved child with epilepsy and they didn't take the epilepsy seriously. Now I know that the epilepsy is the main thing which affects him. The autism's secondary to the epilepsy and one starts the other off. So you have to keep him calm. If he's calm his autism doesn't get out of control and if his autism gets out of control his epilepsy gets out of control.

Discusses the different types of seizures that her son has.

In the morning when he wakes up he has myoclonic type seizures where his head goes to the left and his arms raised and his, he can have about 5 or 10 minutes of these. Sometimes these can carry on until he has the major seizure. It builds up to a major seizure and then, you know, he, he has to be helped to bed and all such things like that. But it's the build up to these major seizures. It can, the build up can be about seven days prior to it. The behaviour can get, he can get quite aggressive and out of sorts and bad tempered and, and he gets obsessive about things. Then you can think it's like a storm brewing and then he has the seizure then he's OK for a while, then it all happens again. 

And how many seizures is he having now? 

Well he has seizures every day, in one shape or form. If it's, if it's not absences, it's myoclonic type. It, he can have partial complex and major seizures. Within a week he can have a, one or two or all of these. But I try to, I always have done and when he was very small I used to walk him down the street and he was having seizures as he was walking. Just to keep him occupied. I find if he's very bored he'll sit, have seizures, and very excited he'll have seizures. And so it's keeping his moods at a reasonable pace. 

Discusses the drug changes her son experienced over the years, and diets.

[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. He's 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. He's 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.

Explains how her spirituality has helped her cope and understand.

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.  

Advises that carers accept help when needed and avoid over-protecting children.

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.