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LIVING WITH EPILEPSY: EDUCATION

Most children with epilepsy attend normal mainstream schools and can participate fully in the schools’ curricular and extra-curricular activities. This is the case even in children in whom the epilepsy is not fully controlled. It is important for the teachers and for the school doctor and nurse to know that a child has epilepsy—even if the child’s seizures are at the current time controlled. Teachers will then know what to expect and what to do if the child has a seizure. The teacher may also involve children in the class in the care of the child after a seizure; this is important for two reasons. First, it teaches children how to help someone in a seizure, and secondly—and perhaps more importantly—it shows children that there is no need to be scared or upset when someone has a fit. Hopefully, such activities may reduce, in future generations, some of the misunderstanding and social prejudice which surround epilepsy.

About one fifth of children with epilepsy are not able to attend a normal school. This may simply be because of different and frequent seizure types which are not fully controlled. However, the more common reason for these children not being able to attend a normal school is that they have additional problems, such as moderate or severe learning difficulties or physical handicaps (or both), as well as their epilepsy. Most of these children will attend special schools, usually within the local neighbourhood. In this situation in the UK, under the terms of the Education Act, the child will have an assessment or ‘statement’ made of his or her educational needs so that the most appropriate school can be found. This statement is based on reports from doctors (including the hospital doctor), teachers, clinical psychologists, therapists, and any other specialist who may have been involved with the child. The ultimate decision as to which school the child should attend rests with the parent.

Perhaps 1-2 per cent of all children with epilepsy may need to attend a school specifically established for children with epilepsy. These schools are usually residential or boarding schools, and the staff have special expertise in teaching children with epilepsy, in coping with their seizures, and in generally supporting them. One of the additional benefits provided by these schools is that they allow separation from the family. The benefit of this lies in the

over-protective attitude of many parents who do not allow their child the opportunity to participate in normal social activities. This clearly may not be in the child’s best interest with regard to either control of seizures or enabling the child to ‘grow’ into adulthood and to develop a degree of independence. The environment provided by these schools encourages self-reliance.

Occasionally, a child with epilepsy, although not having frequent seizures, may be doing badly in school. Rarely this is due to the fact that the child is experiencing many more absences or complex partial seizures. These may actually be first picked up by the child’s teachers. In these situations, an EEG may help to confirm that the child is experiencing frequent seizures. Another rare possibility—but one that is often put forward—is that the child’s poor school work is due to the effect of the anti-epileptic drugs. However, if the child is not excessively sleepy or drowsy, then it is most unlikely that the drugs are interfering significantly with school work. Exceptions include phenobarbitone and phenytoin, which may affect a child’s concentration and therefore their learning potential. In these situations the amount of drug in the blood may need to be checked. The most common reason for learning problems in a child with epilepsy is that the intellectual difficulty and the epilepsy share a common cause due to abnormal development of the brain or brain damage (for example, after meningitis or a head injury). In these situations, an educational psychologist will assess the child’s strengths and weaknesses and advice on the most appropriate school. Sometimes the cause of the child’s learning difficulties may be familial—that is, other family members show similar educational problems which has nothing at all to do with the epilepsy.

Children up until the age of 16 years are well cared for by society, educationally and medically. The difficult time comes after the age of 16 years—the ‘adolescent’ period which, brings changes in social, family, and educational life. This is often a difficult time of life, even for those who do not have epilepsy.

Many changes occur at adolescence which need to be coped with.

• The seizures may change in type, particularly if the epilepsy started at a young age. These changes may include more complex partial and generalized tonic-clonic seizures, and a reduction in absence and myoclonic (jerk) seizures.

• The anti-epileptic medication may have to change in order to maintain control of the epileptic seizures. This may mean a change in dose or even the introduction of different drugs.

• Young people may find it difficult to take their anti-epileptic drug regularly, or they may deliberately decide not to do so. This is more likely to occur in teenagers who have recently been diagnosed and who may find it difficult to come to terms with the diagnosis and need for regular treatment. This may be just one part of a general rebelliousness—against the condition, the treatment, the doctor, family and friends, even life itself. The best way of dealing with these understandable reactions is for the young person to talk about their epilepsy and all its associated problems. Friends may or may not be the easiest to talk to, but hopefully the young person will discuss his or her feelings with the rest of the family and with an understanding doctor.

• There are a number of educational possibilities beyond the normal school leaving age. Many young people with epilepsy will obtain higher qualifications at school and then obtain a place at college or university. It is important that college or university tutors and examiners are told about students who have epilepsy as this promotes and encourages increased awareness and understanding. Those students who live away from home in halls of residence or in rented accommodation should tell friends and college or university tutors.

• Most paediatricians would not think it sensible to continue seeing patients over the age of 16 years. Teenagers of 17 or 18 years have questions and needs that reflect his transition to adult life. All too often transfer from paediatric to adult services in poorly planned. The family doctor will continue his or her support, but consideration of course should be given to transferring care to a neurologist who has a special interest in epilepsy. A special clinic for teenagers with epilepsy has been established in Liverpool to ensure that there is a smooth handover of care from a children’s epilepsy clinic to an adult clinic, and in which the specific issues and problems of teenagers can be dealt with satisfactorily.

• There are many changes in life style at adolescence, with different interests and activities and different sleeping patterns, and it is known that deprivation of sleep and alcohol may precipitate seizures. These activities are important in developing independence and self reliance. There are few activities which young people with epilepsy cannot undertake.

An occasional drink containing alcohol is unlikely to be harmful. However, alcohol can make anti-epileptic medication less effective and may, in excess, bring on a seizure. It is important to get the balance right—and this applies to the correct amount of sleep and appropriate diet, as well as the amount of alcohol that is drunk. Medical research suggests that drinking more than two units of alcohol in less than 12-15 hours may significantly increase the risk of seizures in patients who have epilepsy (2 units = one pint of beer, lager, or cider, or 2 glasses of wine, or two measures (‘shorts’) of spirits such as whisky, rum, vodka, or gin).

• Contraception will also begin to emerge as an important issue during this time. The most effective form of contraception is the pill. The oral contraceptive pill does not make epileptic seizures more or less likely to happen and there is no reason why women with epilepsy cannot take the pill. Certain anti-epileptic drugs (except sodium valproate and the newer ones including vigabatrin and gabapertin) may reduce the contraceptive efficacy of the pill, resulting in an unwanted pregnancy. A contraceptive pill with a high oestrogen content may need to be prescribed, but other forms of contraception (condom or cap plus spermicide) should be considered.

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