Teenagers with epilepsy
epilepsy; teenagers; adolescents; school; driving; sex; pregnancy; risk; risk-taking; seizures; fits; puberty; convulsion; absence;
Contents
The effects of having epilepsy differ for different people.
If a young person has just recently developed epilepsy, she has to adjust to being someone who may have to take medicines forever and to not always being in control of her body. She also will need to deal with a society which often tries to stop her from doing many things, and limits her choices in life.
If a she has had epilepsy since early childhood, she may have been very protected by her parents and have lost confidence in her ability to manage on her own. She may also have learned to use the possibility of having a seizure to get her own way at home and to avoid work at school!
Sometimes a teenager will try to hide her epilepsy, or she may decide she’ll reject others before they reject her. Side-effects of her treatment may affect her appearance, and her self-esteem may be so low that she does not take care with her clothes and hair.
See the related topic called Epilepsy which has information about the nature of epilepsy, its causes and its effects.
Taking responsibility
As children get older, they need to take more responsibility for their health, and by mid-adolescence they should be able to manage on their own most of the time.
- Parents need to work out how to allow their young person the freedom and responsibility that goes with being older and more capable.
- Young people who have epilepsy need to work out how to be 'in charge' of a health issue that is more serious than most of their friends need to manage.
Adolescents with epilepsy will go through all of the normal changes of puberty (physical, social and emotional). Epilepsy will probably not be the cause of most of the difficulties that they have. If they are having problems, always think of other things too, and don't blame it only on the epilepsy. Epilepsy may be a health problem they have, but it should not be a cause of illness, anger or depression, social difficulties and not coping.
Some of the steps in letting go
- Let adolescents see their health professionals on their own. This will encourage them to take responsibility for their own epilepsy management.
- Be encouraging, but remain an observer rather than the person who always takes charge. It is often hard for parents to tread the fine line between being seen as 'not caring' and 'it's my life, I can do what I want'. You will often not be able to get this right in the opinion of your teenager… that is part of the difficulties in living with teenagers (not only ones who have epilepsy).
- It is also important to let young people themselves deal with problems they are having when they see their health professional. Avoid 'I told you so' or similar remarks, which will be seen as put-downs.
High school
- Moving to high school is a big step and sometimes scary. You will need to be especially supportive and understanding of your child's fear of being different.
- The school will be familiar with this move, and the problems which can arise, and there will usually be ways to work out how to manage. It would be best to work out what problems there might be before trouble occurs, so your child knows what to say and do in advance.
- Discuss your child's epilepsy with the school and seek the help of home room teachers or school counsellors if you feel your child is not coping in the school environment.
Although students with epilepsy generally test within the normal IQ range, studies show many of them achieve a lower level than expected. When students perform below expectations, family tension of all kinds may result, especially if parents have high ambitions for their children. To parents, it can seem as if they are lazy and not trying.
- Side effects of some medication can affect how well a student can concentrate. He may know the answers, but it can take longer for him to work problems out and longer to write his work.
- He may have missed a lot of early learning, from time away from school due to health problems or perhaps unrecognised absence seizures. This may not be obvious at primary school, but without the 'foundation' skills and knowledge, it can be difficult to keep up at secondary school.
Some young people with epilepsy will have significant learning problems, which may be due to their epilepsy, to the underlying causes of their epilepsy, or to other problems that are linked to epilepsy.
However, it is also important to be aware that learning and attention problems are common, and can be unrelated to epilepsy.
Physical Education
- There are many kinds of physical education programs, and students with epilepsy should be able to safely take part in a wide range of activities, even if they are still having seizures.
- Sometimes some changes will need to be made to the programs so that they can participate, but it is reasonable to expect that the school will make efforts to be inclusive.
- If seizures are fully controlled, almost all activities should be possible, although swimming, bike riding and rope climbing should always be carefully supervised, and the staff should always be aware that the class includes a student who has epilepsy.
- Have a look at the 'Water safety' guidelines (link below).
It is very important that students are not excluded from some activities which they are capable of safely taking part in because of fear or ignorance.
Driving
- Driving a car may not be allowed if the seizures have not been under excellent control (eg. no convulsions for 1 to 2 years). It is essential to talk to a doctor about the limits on driving.
- All states allow people with epilepsy to drive after a period of time (between 3 and 24 months, depending on their circumstances) in which they have had no seizures, and if their doctors will attest to that fact.
- Have a look at the Australian Guidelines (link below).
Sex and pregnancy
An unplanned pregnancy can be a major problem for both the mother and the developing baby. In almost all cultures, young women are at risk of pregnancy well before their parents are ready to recognise it.
- Young women with epilepsy need good information about contraception, and knowledge about any risks from their medication if they do become pregnant, well before they start sexual relationships, since some medications used for epilepsy can affect the development of a baby.
- She will probably be more able to discuss her contraception needs with her doctor if you have already encouraged her to see her doctor by herself.
- Using a condom is safe, effective if used correctly, and condoms give protection against many sexually transmitted infections.
- The emergency contraceptive pill (ECP, 'morning-after pill') can usually be taken, but a doctor needs to check the young woman's health first.
- If a young woman becomes pregnant while taking medication for epilepsy, it is important to continue taking the medication until she sees a doctor, because stopping abruptly can trigger a convulsion. Most medication does not harm the baby, but it is very important to seek medical advice about this.
Family rules
- Work out, with parents of other young people who are friends of your teenager, what are reasonable ground rules for all young people, not only your child who happens to have epilepsy. For example, what time is it reasonable to expect him to come home, who drives, issues about use of alcohol and tobacco, etc. This can save some of the 'why me' fights.
- Young people with epilepsy will take risks like all other young people, but they may have to cope with restrictions that others do not have.
Career Planning
Most people with epilepsy are successfully employed in a wide range of jobs. However, there are some limitations.
- A person who is having some seizures will have to avoid jobs that require driving a car, bus, truck, etc. as part of the job.
- The issue of safety on the job (for instance if there is a need to handle machinery that is potentially dangerous) is one that teenagers will need to consider carefully when planning future careers, for their own well being and to avoid a disappointing job search.
- People who have an occasional seizure or brief absence seizures a few times a day could do well in jobs in which there is time to make up for a few lost seconds or minutes (such as administration jobs, computing, etc).
When epilepsy is completely controlled, there are very few fields that are closed by law.
Some points to remember
- With all young people, keeping good communication is really important. This is especially so if the young person has a health problem. If communication between your teenager and yourself is not going well, make sure that some other trusted person, such as a school counsellor is watching out for her.
- Make sure that you have time to spend with her, talking about all the things young people enjoy – not just thinking about the health problems.
- When young people have a problem, it is always useful to listen well before you answer, because finding out what is behind it can be very important, eg. "What makes you think that?", "How come?", etc.
Further reading
Resources
South Australia
Web sites
The information on this site should not be used as an alternative to professional care. If you have a particular problem, see a doctor, or ring the Parent Helpline on 1300 364 100 (local call cost from anywhere in South Australia).
This topic may use 'he' and 'she' in turn - please change to suit your child's sex.