‘Mum used to get really mad at me. I did everything I wasn’t supposed to — partied all night, missed meals, drank too much. And I wasn’t too good at taking my pills either, though I have to admit there were other drugs I took pretty regularly! I knew exactly what I was doing, and I knew it wasn’t doing my epilepsy much good either. It certainly made me have more seizures. But somehow that didn’t matter too much — what was more important to me was to feel I wasn’t missing out on anything, that I was doing what my mates were doing. I didn’t want to have epilepsy. I didn’t want to be different. I suppose I’ve got a bit more sense now, but I don’t regret it. I had a good time then.’
This is how Adrian, now 22 and leading a rather more sober and regular life, his seizures well under control, described his teenage years. Adrian was lucky; his epilepsy was not too bad and his seizures never went seriously out of control. His behaviour might have had dangerous consequences if his epilepsy had been more severe.
Adolescence is a difficult time for any teenager. For the teenager with epilepsy (especially if the condition develops during adolescence) it can be particularly difficult. Their own good health is something that most teenagers are able to take so much for granted that it is not even a matter for thought, let alone a cause for concern. The teenager with epilepsy may become suddenly and uncomfortably aware of the fact that they are ‘different’ — the last thing any adolescent wants to be. Their self-esteem may take a dive and they are beset not only by anxiety about the seizures themselves, but about what they look like during a seizure and the loss of dignity involved in having a seizure in front of their friends. They have to cope with social difficulties too: when they meet a new girlfriend or boyfriend, should they tell them about the epilepsy? And if so should they broach the subject early on in the friendship, or wait till they know each other better?
WHOSE EPILEPSY IS IT ANYWAY?
How much independence a teenager should be given, and how soon, causes more friction between parents and adolescents than almost anything else. When a child has epilepsy it can be especially difficult for the parents to stand back and let the child make their own decisions and, sometimes, their own mistakes. But this letting go has to happen if the child is eventually to become independent.
One of the ways you can encourage your child to become independent is by helping them build up their own relationship with their doctor and encouraging them to ask their own questions. As your child enters their teens, make sure you do not go with them every time they have an appointment with their doctor. Letting them go on their own is a first step towards letting them take over responsibility for their epilepsy along with other areas of their life.
HOW TEENAGERS COPE
Not surprisingly, many teenagers find it very hard to come to terms with a diagnosis of epilepsy. What is more surprising is that it seems to be those adolescents who have tonic clonic seizures but have never had a seizure in public, and those who have simple epilepsy with no complications and no significant brain damage, who seem to find it most difficult to cope. Their most potent anxiety seems to be the fear of ‘coming out’ – of being recognized as having epilepsy. Teenagers who are to all intents and purposes perfectly normal and healthy and whose friends may have no idea they have epilepsy may feel they have everything to lose if their condition is ‘discovered’. So it is perhaps not so surprising that the diagnosis hits them so hard.
Coping by acting out
Anxiety and stress often show themselves in generally difficult, ‘acting-out’ behaviour. There may be verbal abuse, temper tantrums or aggressive outbursts. Or there may be more serious problems: suicide gestures, drug abuse or running away from home. Your child may refuse to talk or listen to you, but they do need to talk to someone, and it may be easier for them if that someone is not directly involved, especially if they can talk to them in confidence. Professional help is called for.
If you are a parent faced with this problem, the best place to start is with your GP. Some GP practices have their own counselling service. If yours does not, contact the British Epilepsy Association and ask if there is an epilepsy counsellor in your area. Finally, you could ask your GP to refer your child to the local psychiatric services specifically for counselling.
Coping by regression
Adolescence is the time when children should start to become independent, taking control of their own life and making their own friends and their own decisions. This is an essential part of growing up. Young teenagers who develop epilepsy often react by regressing, becoming more childlike and dependent. This kind of behaviour is almost bound to increase their parents’ natural tendency to be overprotective towards them. The child may then find him or herself in an uncomfortable situation — on the one hand hostile because they hate being controlled and resent it; on the other hand feeling dependent on the very people who are arousing this hostility. There is a real danger that the normal development of the adolescent into an adult will be hindered, and that for too long they will remain unnaturally dependent on their parents.
Coping by denial
One quite common reaction is for the teenager to deny that anything is wrong. Often such denial is self-destructive: they may stop taking their medication or refuse to go for their regular clinic check-ups. But it can also be the way they protect themselves from the ridicule of other people. For someone whose epilepsy is well controlled, ignoring the epilepsy’s existence may seem easier than ‘coming out’ and explaining it to friends.
Unfortunately there are features of the adolescent’s life style (late nights and shortage of sleep, irregular meals, emotional stress and alcohol abuse) which are likely to be especially harmful to someone with epilepsy. A teenager who is determined to lead an ordinary teenage life despite their epilepsy may develop what parents see as a wilful disregard of their own health and safety. Throughout their teenage years, adolescents become increasingly reluctant to let parents interfere in or control their life. For parents of a child with epilepsy, who know that their child’s health is on the line, giving up control is particularly hard.
It is difficult for parents to get the balance right. Limits still have to be set, and it is impossible for them to stand by and do nothing. And yet too many remonstrations about risk-taking behaviour, too many reminders about taking medication and keeping appointments may be counter-productive.
It is worth reminding yourself that all teenagers are at least a little rebellious, and all are struggling to get a measure of independence from their parents. The only strategy which is likely to work is to give your son or daughter as much control and independence as you can in other ways. Do not waste your energy or influence on things which really do not matter so much or which are none of your business: their friendships, for example, the clothes they wear or the hairstyles they adopt. There is then rather more chance that they will be prepared to listen to you about the things which really are important, and that they may perhaps even modify their behaviour.
Children whose attitude is to deny their epilepsy also refuse to regard it as a handicap. They do not allow it to prevent them doing what they want, or to impede their development and their plans for the future. This is a healthy attitude to take, but they should also be realistic in their ambitions. Occasionally denial can lead to self-destructive behaviour — for example when a teenager decides that they are perfectly capable of going swimming without supervision. Parents may occasionally have to help them keep a sensible balance between acknowledging the fact of their epilepsy and not letting it limit their life or activities unnecessarily.
Finally, if your life is a constant battle with a teenager who seems to you to be rebellious to the point of madness about his or her own well-being, remember that, as with every other adolescent, there is every chance they will eventually grow up and grow out of it.
COSMETIC EFFECTS OF MEDICATION
Refusal to comply with their drug regime may not be just an act of teenage rebellion, but based on a perfectly sound reason. Some young people, especially teenage girls, refuse to take their medication because as well as controlling seizures, some anti-epileptic drugs do, unfortunately, have undesirable cosmetic side-effects. Teenagers may have to suffer unwanted hairiness or hair loss, coarsening of the skin or excessive weight gain. Phenytoin is one of the worst culprits as regards spots and skin quality and sodium valproate may cause hair loss and weight gain.
Side-effects like these deal a blow to anybody’s self-esteem, but for the teenager, for whom appearances count so much and who tend to be intensely self-conscious even at the best of times, they are especially hard to bear. Any teenager whose’ life is being made miserable by the cosmetic side-effects of medication should talk to their doctor about the possibility of changing drugs, even if their seizures are well controlled. It may be one of those situations where a slight increase in seizures is worth risking for the sake of the teenager’s psychological well-being.
THE LURE OF THE DRIVING LICENCE
For many teenagers, the ability to drive is a hallmark of adulthood and a passport to independence. Unless the teenager’s epilepsy is well controlled, he or she will be unable to obtain a driving licence. So this is a carrot parents may find it valuable to dangle in front of the nose of the teenager with epilepsy who will not comply with their drug regime, or is reluctant to keep up regular clinic visits.
*72\193\2*
THE ADOLESCENT WITH EPILEPSY‘Mum used to get really mad at me. I did everything I wasn’t supposed to — partied all night, missed meals, drank too much. And I wasn’t too good at taking my pills either, though I have to admit there were other drugs I took pretty regularly! I knew exactly what I was doing, and I knew it wasn’t doing my epilepsy much good either. It certainly made me have more seizures. But somehow that didn’t matter too much — what was more important to me was to feel I wasn’t missing out on anything, that I was doing what my mates were doing. I didn’t want to have epilepsy. I didn’t want to be different. I suppose I’ve got a bit more sense now, but I don’t regret it. I had a good time then.’This is how Adrian, now 22 and leading a rather more sober and regular life, his seizures well under control, described his teenage years. Adrian was lucky; his epilepsy was not too bad and his seizures never went seriously out of control. His behaviour might have had dangerous consequences if his epilepsy had been more severe.Adolescence is a difficult time for any teenager. For the teenager with epilepsy (especially if the condition develops during adolescence) it can be particularly difficult. Their own good health is something that most teenagers are able to take so much for granted that it is not even a matter for thought, let alone a cause for concern. The teenager with epilepsy may become suddenly and uncomfortably aware of the fact that they are ‘different’ — the last thing any adolescent wants to be. Their self-esteem may take a dive and they are beset not only by anxiety about the seizures themselves, but about what they look like during a seizure and the loss of dignity involved in having a seizure in front of their friends. They have to cope with social difficulties too: when they meet a new girlfriend or boyfriend, should they tell them about the epilepsy? And if so should they broach the subject early on in the friendship, or wait till they know each other better?WHOSE EPILEPSY IS IT ANYWAY?How much independence a teenager should be given, and how soon, causes more friction between parents and adolescents than almost anything else. When a child has epilepsy it can be especially difficult for the parents to stand back and let the child make their own decisions and, sometimes, their own mistakes. But this letting go has to happen if the child is eventually to become independent.One of the ways you can encourage your child to become independent is by helping them build up their own relationship with their doctor and encouraging them to ask their own questions. As your child enters their teens, make sure you do not go with them every time they have an appointment with their doctor. Letting them go on their own is a first step towards letting them take over responsibility for their epilepsy along with other areas of their life.HOW TEENAGERS COPENot surprisingly, many teenagers find it very hard to come to terms with a diagnosis of epilepsy. What is more surprising is that it seems to be those adolescents who have tonic clonic seizures but have never had a seizure in public, and those who have simple epilepsy with no complications and no significant brain damage, who seem to find it most difficult to cope. Their most potent anxiety seems to be the fear of ‘coming out’ – of being recognized as having epilepsy. Teenagers who are to all intents and purposes perfectly normal and healthy and whose friends may have no idea they have epilepsy may feel they have everything to lose if their condition is ‘discovered’. So it is perhaps not so surprising that the diagnosis hits them so hard.Coping by acting outAnxiety and stress often show themselves in generally difficult, ‘acting-out’ behaviour. There may be verbal abuse, temper tantrums or aggressive outbursts. Or there may be more serious problems: suicide gestures, drug abuse or running away from home. Your child may refuse to talk or listen to you, but they do need to talk to someone, and it may be easier for them if that someone is not directly involved, especially if they can talk to them in confidence. Professional help is called for.If you are a parent faced with this problem, the best place to start is with your GP. Some GP practices have their own counselling service. If yours does not, contact the British Epilepsy Association and ask if there is an epilepsy counsellor in your area. Finally, you could ask your GP to refer your child to the local psychiatric services specifically for counselling.Coping by regressionAdolescence is the time when children should start to become independent, taking control of their own life and making their own friends and their own decisions. This is an essential part of growing up. Young teenagers who develop epilepsy often react by regressing, becoming more childlike and dependent. This kind of behaviour is almost bound to increase their parents’ natural tendency to be overprotective towards them. The child may then find him or herself in an uncomfortable situation — on the one hand hostile because they hate being controlled and resent it; on the other hand feeling dependent on the very people who are arousing this hostility. There is a real danger that the normal development of the adolescent into an adult will be hindered, and that for too long they will remain unnaturally dependent on their parents.Coping by denialOne quite common reaction is for the teenager to deny that anything is wrong. Often such denial is self-destructive: they may stop taking their medication or refuse to go for their regular clinic check-ups. But it can also be the way they protect themselves from the ridicule of other people. For someone whose epilepsy is well controlled, ignoring the epilepsy’s existence may seem easier than ‘coming out’ and explaining it to friends.Unfortunately there are features of the adolescent’s life style (late nights and shortage of sleep, irregular meals, emotional stress and alcohol abuse) which are likely to be especially harmful to someone with epilepsy. A teenager who is determined to lead an ordinary teenage life despite their epilepsy may develop what parents see as a wilful disregard of their own health and safety. Throughout their teenage years, adolescents become increasingly reluctant to let parents interfere in or control their life. For parents of a child with epilepsy, who know that their child’s health is on the line, giving up control is particularly hard.It is difficult for parents to get the balance right. Limits still have to be set, and it is impossible for them to stand by and do nothing. And yet too many remonstrations about risk-taking behaviour, too many reminders about taking medication and keeping appointments may be counter-productive.It is worth reminding yourself that all teenagers are at least a little rebellious, and all are struggling to get a measure of independence from their parents. The only strategy which is likely to work is to give your son or daughter as much control and independence as you can in other ways. Do not waste your energy or influence on things which really do not matter so much or which are none of your business: their friendships, for example, the clothes they wear or the hairstyles they adopt. There is then rather more chance that they will be prepared to listen to you about the things which really are important, and that they may perhaps even modify their behaviour.Children whose attitude is to deny their epilepsy also refuse to regard it as a handicap. They do not allow it to prevent them doing what they want, or to impede their development and their plans for the future. This is a healthy attitude to take, but they should also be realistic in their ambitions. Occasionally denial can lead to self-destructive behaviour — for example when a teenager decides that they are perfectly capable of going swimming without supervision. Parents may occasionally have to help them keep a sensible balance between acknowledging the fact of their epilepsy and not letting it limit their life or activities unnecessarily.Finally, if your life is a constant battle with a teenager who seems to you to be rebellious to the point of madness about his or her own well-being, remember that, as with every other adolescent, there is every chance they will eventually grow up and grow out of it.COSMETIC EFFECTS OF MEDICATIONRefusal to comply with their drug regime may not be just an act of teenage rebellion, but based on a perfectly sound reason. Some young people, especially teenage girls, refuse to take their medication because as well as controlling seizures, some anti-epileptic drugs do, unfortunately, have undesirable cosmetic side-effects. Teenagers may have to suffer unwanted hairiness or hair loss, coarsening of the skin or excessive weight gain. Phenytoin is one of the worst culprits as regards spots and skin quality and sodium valproate may cause hair loss and weight gain.Side-effects like these deal a blow to anybody’s self-esteem, but for the teenager, for whom appearances count so much and who tend to be intensely self-conscious even at the best of times, they are especially hard to bear. Any teenager whose’ life is being made miserable by the cosmetic side-effects of medication should talk to their doctor about the possibility of changing drugs, even if their seizures are well controlled. It may be one of those situations where a slight increase in seizures is worth risking for the sake of the teenager’s psychological well-being.THE LURE OF THE DRIVING LICENCEFor many teenagers, the ability to drive is a hallmark of adulthood and a passport to independence. Unless the teenager’s epilepsy is well controlled, he or she will be unable to obtain a driving licence. So this is a carrot parents may find it valuable to dangle in front of the nose of the teenager with epilepsy who will not comply with their drug regime, or is reluctant to keep up regular clinic visits.*72\193\2*
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