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Living with Epilepsy

Adolescents Companion’s Guide

Epilepsy in Adolescence —
A Companion’s Guide

This content has been abridged for the website — please download the Full PDF Booklet for all the available information, including:

Medical Aspects of Epilepsy

A single seizure does not constitute epilepsy. There must be a history of recurrent seizures before a diagnosis of epilepsy is confirmed.

Seizures can take many forms but most people with epilepsy will tend to have mainly one type. Sometimes however, people have two or more different types of seizure.

Epilepsy can affect anyone at any time, although it often starts in early life. It is often difficult to diagnose as it is not always clear that the episodes people experience are actually epileptic seizures. Sometimes nonepileptic attacks such as fainting or hysterical episodes can be mistaken for epilepsy. These episodes can so closely mimic a true epileptic seizure that they are sometimes referred to as ‘Pseudoseizures’.

The reason why epilepsy develops is not always obvious and for almost 70% the cause is unidentifiable. There are two main causes of epilepsy:
(a) Brain injury or disease and
(b) Hereditary susceptibility

The brain damage can occur as a result of injury to the head, infections such as encephalitis or meningitis, malformation of the brain, degeneration of the brain or metabolic (biochemical) disorder as a result of low blood glucose, low calcium level or the effect of drugs, particularly alcohol. One further cause of brain damage is the development of a tumour.

Hereditary factors can be important since epilepsy can be inherited. In the majority of cases, however, inheritance probably only plays a limited role. This is especially true in relation to partial seizures.

More often than not the cause cannot be identified. Epilepsy with no known cause is said to be idiopathic epilepsy. 
Many people wrongly believe that there are only two types of seizure – tonic-clonic seizures (incorrectly called Grand Mal) and absence seizures (incorrectly called Petit Mal).

There are, in fact, many types of seizure and an international classification has been developed to differentiate between the different types.

In simple terms there are Generalised Seizures and Partial Seizures. The whole brain is involved in generalised seizure and only part of the brain is involved in partial seizures. Both generalised and partial seizures can be subdivided into various types. More detailed information about seizure types can be obtained from reference books as listed at the back of this booklet.

The first people to become aware of a problem are almost certain to be parents and they will, in normal circumstances, contact the family doctor for advice.

The Diagnosis

The first people to become aware of a problem are almost certain to be parents and they will, in normal circumstances, contact the family doctor for advice. It is highly likely, and indeed desirable, that a referral will be made to a hospital consultant, who will in turn advise the family doctor on the best course of treatment.

The doctor will want to know as precisely as possible what happened when the episode occurred. The person attending the hospital with adolescents should expect the following line of questioning and be prepared to answer those which they are unable to answer themselves:

Having completed the documentation, a full medical examination is carried out where such things as heart rate, balance, eye-control and reflexes are checked. Other tests will be organised which will almost certainly mean a further visit to the hospital.

Tests and Scans

For more details on the tests and scans below, download the Full PDF Booklet

Electroencephalogram (EEG)

The brain works through a network of nerve cells which communicate with each other by electric signals. The EEG detects and records these signals.

Video EEG Telemetry

This is done by linking EEG equipment to a video camera and recorder whereby the traces recorded and the youngster’s body activity are combined together on the one recording.

Ambulatory monitoring of EEG

This is portable EEG equipment used to take recordings over a 24-hour period. Here, a small cassette recorder is carried around the waist and is connected to the scalp by leads.

Computerised Axial Tomography
(CT or CAT Scan)

This test is rarely necessary for investigations into epilepsy but occasionally it is required. In essence, the machinery takes X-rays of segments of the brain.

Magnetic Resonance Imaging
(MRI Scan)

The brain’s own radio signals are stimulated by a magnetic field and these signals can be mapped out and read by the machine, giving a very clear picture of the inside of the brain.

Antiepileptic Drug Treatment

50 - 70% of people’s seizures will be well controlled by medication with minimal side effects. 30 - 35% will have seizures which are resistant to antiepileptic drugs and the management of their epilepsy will be more difficult.

Alternative Treatments

The indications for using alternative treatments such as acupuncture and aromatherapy have yet to be established in terms of their effectiveness.

Surgical Treatment

Certain people, whose epilepsy is very poorly controlled by drugs, are considered for surgical treatment. This treatment is only available in a few specialist centres and is available only for specially selected hospital patients.

Counselling Services

For those who have difficulty in coming to terms with a diagnosis of epilepsy, some specialised clinics provide a counselling service, as do most GP practices.

First Aid for Seizures

In the event of youngsters being diagnosed as having a convulsive type of epilepsy, it is essential that their companions are fully aware of basic first aid procedures. See our First Aid page for more details or download the Full PDF Booklet

Educational Aspects

Mainstream Provision

As a general rule, children in mainstream education transfer to the secondary sector at the age of 11 years.

The transfer to secondary education is a huge step for many children. They are moving into a much larger school, where new relationships with both children and staff have to be established. For the children who have enjoyed a very secure environment within a primary school, where they are known on a first name basis to every member of staff and virtually to all of the rest of the pupils, it is hardly surprising that the transfer to the secondary school, although eagerly awaited, can be quite traumatic.

For those children with epilepsy, special problems can arise at the age of transfer, albeit that most of these can be successfully dealt with. The most important consideration, and a somewhat obvious one, is that of choosing the best school to meet their needs.

Placement options should be considered at least two years before transfer is to take place, i.e. Year 6 of primary school.

A useful first step is to discuss future provision with the primary school headteacher. In areas where designated primary schools ‘feed’ the local secondary school, relevant information should be readily available.

Further information can be gained personally by visiting a variety of schools to establish if there are any strategies already in place for dealing with pupils who are subject to epileptic seizures. Questions should be asked to establish school policies relating to such areas of staff training in connection with medical conditions of pupils, care and administration of medication if a ‘school day’ dose is required and special needs provision (particularly if the pupil in question is ‘statemented’ as a direct result of epilepsy).

For further details, download the Full PDF Booklet

Special School Provision

It is more likely that those who attend special schools after the age of 11 years will complete their formal education in those special schools. There is, however, some provision for many of these young people to continue in full-time education until the age of 18 years and their teachers will be in a position to advise as to the levels of that provision.

Notes for teachers

Epilepsy is just one of the many disabilities teachers are likely to come across during a teaching career.

It is likely, however, to be more common than many and will undoubtedly be the most common of all neurological disorders encountered. It is conservatively estimated that over 100,000 children in the UK have some form of epilepsy and so it can be expected that a secondary school of 1,000 pupils will have at least 5 pupils on roll at any one time who have epilepsy and a primary school with 200 children will have at least one.

Adherence

Without being overbearing, every effort should be made to impress upon youngsters who have epilepsy the importance of taking their antiepileptic medication as prescribed. It is not at all unusual for them to forget on the odd occasion and when this does happen it should not be blown up into a major issue.

If, however, there is a suspicion that medication is being missed deliberately, the best way forward is to gently persuade them of the error of their ways. Strangely enough, some degree of non-compliance can be as a result of successful control of the seizures by the very drugs they are failing to take. For some, being seizure free breeds a false sense of security and there is a temptation to test whether it really is the medication that is stopping them from having seizures, by stopping taking the drugs. Unfortunately, this usually leads to complete disillusionment when the almost inevitable seizure occurs. In such cases it is back to the drawing board in gently persuading them to comply with their drug regime.

Sports & Leisure

Young people with epilepsy should be encouraged to pursue a full and active social life, joining in all the usual sporting and social activities.

As adolescents mature their interests lead them to more adventurous pursuits than they enjoyed as young children. Sporting activities become more competitive and varying standards of ability become more apparent. It is vitally important that it is impressed upon them that the only difference between them and their friends is that they are subject to sudden occasional loss of consciousness which, if the seizures are convulsive, can cause them to fall to the ground with muscles jerking out of control. When they are not experiencing a seizure they are as normal as the next person. It follows, therefore, that if the only time that epilepsy is apparent is when a seizure occurs, then during seizure free periods there should be only limited restrictions on the types of sport they can enjoy and participate to high standards.

Whilst being as positive as possible in encouraging participation in sport it has to be recognised that some sports are unsuitable for those with epilepsy. For instance; scuba diving and mountaineering are obviously unsuitable sports for those who are subject without warning to transitory losses of consciousness. Rather than dwell on what cannot be done, far better to concentrate on encouraging participation in the many sports that can be enjoyed fully.

The biggest mistake companions can make is to be overprotective and put a damper on everything. Young people as they mature tend to become more and more self-reliant and attempts to stifle their natural pursuit of fun and enjoyment unnecessarily can cause rebellion, with all its attendant problems.

There are vast numbers of hobbies which can be taken up by young people with epilepsy being diverse as interests in pop music through to classical ballet. They should be encouraged to follow particular interests.

Alcohol

Alcohol taken in moderation can be pleasurable and relatively harmless. It is the abuse of alcohol which causes the trouble.

Virtually all young people are introduced to alcohol before reaching the age where they can legally buy it themselves. It is essential, therefore, that youngsters who have epilepsy are made aware of the particular dangers of excessive use of alcohol in relation to their medical condition. Since epilepsy results from a malfunction of the brain it is fairly obvious that the introduction of a substance that, in any event, affects normal brain function can be a recipe for an increase in seizures. It has to be remembered also that alcohol is not the only foreign substance reaching the brain, there is also the antiepileptic drug which is specifically designed to influence the workings of the brain. Requiring the antiepileptic drug to compete with excess alcohol in the brain is, as a general rule, a recipe for disaster.

Whilst the dangers are obvious, it would be foolish to suggest that outright condemnation of alcohol is the correct way forward. Young people, being what they are, will see prohibition as a direct challenge and, one way or another, will take a drink even if they only defy and prove others wrong. Far better to keep the subject low-key and gently persuade rather than dictate.

In reality, social drinking in moderation will not affect those with epilepsy any more than others who have never had a seizure in their lives. A glass of wine with a meal or a quiet drink with family and friends should do no harm at all.

It is not only important for the young person with epilepsy to be aware of particular problems of alcohol in relation to epilepsy but their friends must have responsible attitudes as well.

Driving

Most young people aspire to the day when, at the age of 17 years, they can apply for a driving licence. It is not difficult to imagine the anger and frustration which sometimes arises when, because of epilepsy, this aspiration is denied.

The fact that some young people have epilepsy does not mean that they will never be able to drive. Once free from seizures for prescribed lengths of time the law does make provision for them to apply for and gain a licence. This fact can be a potent force in ensuring that medication is taken as and when required so as to preserve a seizure free life.

Do not let the situation arise where the youngsters are misinformed as to the legal position. They should be given the facts.

Peer Group Pressure

A lot of pressure not to conform to advice and/or restrictions advocated by adults can be put upon youngsters by their friends and associates. This pressure can tempt those with epilepsy to experiment away from patterns which they have practised for many years and which are aimed to control seizures.

They don’t want to be seen as different and so often succumb to suggestions such as neglecting to take tablets and experimenting with alcohol.

Occasionally such peer group pressure can lead to activities which are outside of the law, such as illegal driving of motor vehicles. The temptation to be like the others who have driving licences and drive quite legally is enormous. Unfortunately, giving in to such pressure can lead to disaster. The way forward here is to educate friends about epilepsy by offering a general overview, letting them know and understand why some pursuits are not desirable.

Sexuality

It has to be recognised that nowadays young people are sexually active at an early age. This raises all sorts of issues, not least the whys and wherefores of contraception and in the case of those who have epilepsy, the possible side effects of antiepileptic drugs and the way they affect other medicines such as the oral contraceptive pill.

Some antiepileptic drugs can affect the developing foetus and therefore it is very important that girls receive medical advice before becoming pregnant or as soon as possible when an unplanned pregnancy is suspected.

Parents often find raising such a subject very difficult but nevertheless it should be taken on board if there is cause for concern. Advice on how to deal with such an emotive subject can be obtained from epilepsy specialist nurses.

Psychological Aspects

Reaction of the Adolescent to Epilepsy

Developing epilepsy in adolescence can also create a number of psycho-social problems in addition to those normally associated with this period of development. Adolescence is a time when young people are considering their own identity, sexuality and independence and epilepsy can severely disrupt this normal development. If epilepsy is diagnosed during adolescence then there may be some denial on the part of the sufferer. Parental overprotection and social restrictions may lead to social isolation which can have a detrimental effect on psychological wellbeing including increased rates of anxiety and depression.

Furthermore, there is some evidence to support the view that adolescents with epilepsy may, because of overprotection, be less socially skilled and subsequently have lower levels of confidence and self-esteem.

Teenagers who believe that they have little or no control over unpleasant circumstances may be more susceptible to psychological problems generally and anxiety and depression in particular. Teenagers with epilepsy (who clearly may feel they have little control over their lives) may develop a significantly poorer sense of control over their lives (mastery) than their friends without epilepsy. Having a poor sense of mastery has been shown to be linked to high levels of anxiety, depression and poor self-esteem. The more people believe that their health is controlled by forces external to them, the more anxious, depressed and ill they may feel.

For more details on the topics below, download the Full PDF Booklet

Where epilepsy is diagnosed in the early or middle teens, knowing the facts can ensure a balanced attitude towards the condition.

Travelling abroad with epilepsy can raise some safety issues, so we have provided some essential phrases and downloads to help you on your journey.

From Diagnosis to Treatment, Employment to Education, advice for work and homelife — our guide has got you covered.