Parenting and epilepsy

Many of the people we interviewed discussed the impacts their epilepsy had had on parenting. If seizures are well-controlled, having epilepsy will not interfere greatly with looking after a child. If seizures are not well-controlled, then risks do exist and these risks will depend on the nature of the seizures the person has. If seizures are sudden and unpredictable, dressing, changing, feeding and bathing the child should be carried out on the floor. Some people discussed their concerns about safety when looking after young children. One woman also noted how her daughter reacted to her seizures and supported her.

Mentions some of her concerns about safety and describes how her daughter reacted to her seizures.

Age at interview 30

Gender Female

Age at diagnosis 9

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Family, it’s not stopped me from having a family, just precautions were set in place, safety for my daughter i.e., changing nappies, never did it on work surfaces etc., always on the floor where she couldn’t be dropped; and bathing her, the littlest amount of water possible in the bath, just in case. And I always had to make sure that when she became crawling, I always had to make sure that she was in a safe place if I had to rush off for a seizure. I’m lucky in the sense that I do actually get warnings. I can imagine it not having that warning would be horrible.

…I didn’t ever think [my daughter] would get used to the seizures being as I scream in my seizures. I’ve been told she used to scream at the same time. Now shes actually there holding my hand, although I don’t remember anything, I can feel her holding my hand and when I come to, she says to me ‘You all right now mummy? I’ll look after you mummy, I’m brave. And now I know she got used to them. I didn’t think she ever would, but she did.

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Several people with young babies discussed their concerns about parenting. Those with older children often explained how their children reacted to their epilepsy. One woman reported that at first her daughter was angry and impatient because she could no longer depend on her mother in the same way. A man discussed some of the difficulties that children may face when a parent has epilepsy. He also advised that parents should accept help from others when needed.

Discusses some of his concerns about parenting.

Age at interview 32

Gender Male

Age at diagnosis 24

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The very next big issue was then my wife and I got married and we had our first baby a few months ago. And the issue of pregnancy was how will I be able to cope with children. And I’m quite fortunate because theres a minute warning that’s, it means I’ve just got to make sure I’m always in a position that I can put my baby down, have her in a secure place. At the moment it’s relatively easy because she can’t move, she can’t crawl or anything. When she can crawl or walk, then I’ll have to work out how to deal with that point, but the key point again for me would be how to make sure my children understand what’s happening to daddy (laughs). So that they can almost look after daddy and make sure they can look after themselves. But that’s you know sort of an issue for my wife and I in our relationship, is how do we do that. I mean one of the things about me having epilepsy is it puts more burden on my wife in that shes the one that has to do all the driving, and there would be concern about leaving the child alone with me at times when it’s likely to happen.

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Discusses some of the problems children might have to face and advises accepting help from others.

Age at interview 51

Gender Male

Age at diagnosis 15

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It’s difficult for the boys to grow up with an epileptic parent. In some cases they can resent it; in other cases they can be very caring. It is difficult to actually, I think that having children and helping them understand is difficult. Please be patient with them. In the case of my elder boy, he couldn’t really understand it, but now at 18 he actively helps me with the librarianship of the local [support] group and is very understanding. So this is a great boon. I think it appears that some of the reasons why he may have been a bit horrible to me when he was much younger was that he was actually worried about what was going to happen to me. And there had been some deaths within the local group and he was actually very worried.

The other aspect is, I have spoken before about having young children, this is a wonderful thing to have but there is an impact. The um, in my case although I cannot remember this because I had a difficult time in the 80s where I can’t remember very much at all, that babies fits during the night, uh, babies’ cries during the night – sorry I do sometimes get the wrong words – cries during the night did trigger fits. And especially as many sufferers do need a good night’s sleep this can be a problem.
I think if one appreciates the problem one can do something about it, but it’s something that word of warning, sorry –

Don’t worry.

Word of warning, to anyone who is thinking of embarking on a family, I think it’s important to try and ensure that you have a lot of help around, parents or relatives or very good friends to help in those matters so that you can try and regulate yourself, your sleep, and try and cope better.

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One woman explained that her epilepsy had made her children more aware and understanding of the condition. Several people said that they would explain more about epilepsy to their children as they got older. Others discussed telling their children about the condition and how children might have to defend their parents if other people are unkind. One woman described how her seizures sometimes frightened her son when he was younger.

Explains that her seizure frightened her son and how children might have to defend their parents.

Age at interview 48

Gender Female

Age at diagnosis 10

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One thing that I found quite difficult was how my son related to my epilepsy. And weve always been very up front with him about it and talked to him at his level, that he could understand what it was, making very little of it. And saying it was a perfectly normal thing to have, just like any medical condition but not everybody had it and I had it. And one day when he was about 3 or 4 years old I had a fit at home with him alone, with just the two of us here, and he must have run up to me to see what I could do, I was lying on the ground. And theres a phase during my seizures when I spit a bit, in fact I always warn people not to come too close but I spat at him, into his face and he was really, really frightened at his mummy doing this. And he ran and hid behind our speakers, which are big enough to hide behind…

But I think it’s quite hard in school for children to be talking and then someone says ‘Oh your mummy has fits,’ and the little child’s got to stand up for itself and say ‘Well OK yeah my mummy has fits, so what. So I think that’s quite a difficult aspect and I think that’s something that people really benefit from talking to other people, about how they’ve managed with their children.

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People also discussed how rewarding it was to have children. One man recalled his anxieties about having children and the risks that might have been involved. He praised the information he had been given by an epilepsy organisation. Another man said that he and his wife had decided against having children because of the possible risks.

Discusses his concerns about having children and praises the information he received about…

Age at interview 43

Gender Male

Age at diagnosis 27

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But we decided to take a sort of second opinion if you like, and on that advice went ahead and had children and theres been no indication, my kids now are 12, 13 and 16, theres no indication whatsoever that any of them have got epilepsy. They’re all doing excellent, one is going through GCSEs and looks as though hes going to be coming out with As and Bs. And my daughter is, just about to start that stage as well and shes doing really well.

So whereas you know you got that impression at the beginning that may be if we had children I would be giving them some burden that would really affect them in their life, if anything it’s been completely the opposite. All three of them are doing very well. So that was a piece of advice that I think was best ignored.

And I think that’s one of the things that I found beneficial is the Epilepsy Association were excellent. Whenever we wanted advice or needed sort of a reference point or somebody to talk to, they were very, very good. And in that respect helped us a great deal. And I you know felt that right from the start if ever there was any sort of question that I needed answering that I didn’t know, like for example the one about should I have children, they were the first people I went to and asked, and they sort of said how ridiculous that suggestion was, that they were certainly the one group of people if you like that helped us most.

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Women and epilepsy

Women with epilepsy discussed various issues that were important to them, including hormonal changes, contraception, conception and pregnancy. Some women find that seizures occur just...