Epilepsy - A Parents' Guide

Many people with epilepsy experience their first seizure before the age of 20. So, if your child has developed epilepsy, you are not alone and, these days, there's a good chance that her/his condition can be kept well under control.

Childhood epilepsy varies enormously in type, degree or severity and can be linked with other problems. Most children with straightforward epilepsy have a perfectly normal, active childhood and, with a few sensible safety precautions, are able to enjoy doing all the things their friends do, like swimming, sports and games and so on. Sometimes, however, the condition is more serious, and children need long-term treatment and support.

Hopefully this guide will help you, as a parent or carer, to understand your child's condition so you can encourage her/him to grow into a happy, independent individual who is confident about the future.

Describing childhood epilepsy

Epilepsy can begin at any age but it often starts early in life. Although some people believe it is linked with physical disability or mental handicap, in fact most children with epilepsy have exactly the same range of intelligence and abilities as unaffected children.

Some do have physical or mental problems as well as seizures, which may be linked to brain damage or disease. It's usually these underlying problems which have caused epilepsy, however, rather than the other way round.

Is it my fault?

Like many parents you may wonder whether something you did or failed to do sparked off your child's epilepsy, and searching for a cause is part of your attempt to come to terms with your child's condition. However, it's highly unlikely that anything you did is responsible for your child's seizures and, in many cases, the cause of epilepsy is a mystery.

Spotting epilepsy in childhood

It can be very frightening to see your child having what appears to be a seizure. However, it's important to keep calm so you can describe exactly what happened to the doctor. Epilepsy is often difficult to diagnose, and it is not always clear whether a child has had a seizure. If your child collapses for any reason at all contact your doctor. Children, like adults, can have either generalized or partial seizures. Other conditions can sometimes be mistaken for epilepsy and it's important for the doctor to exclude these. They include febrile convulsions and breath-holding attacks.

Febrile convulsions

These convulsive seizures are caused by a rapid rise in temperature and linked to childhood illnesses such as tonsillitis and teething. Fortunately, most children grow out of them by the time they start school. Also see Febrile Seizures down below.

Breath-holding attacks

These are an extreme reaction to shock or frustration. Instead of screaming with fear, pain or anger, the child screams once, draws a huge breath as if to carry on and then holds it for so long she/he passes out. This causes the child to stop holding her/his breath. Although alarming to witness, your child can't do himself lasting physical harm during such an attack.

Difficult to control epilepsy (epilepsy 'plus')

Although the outlook is good for most children with epilepsy, some children have severe forms of the condition which are difficult to control with drugs and continue having seizures. They can include various 'syndromes'. A syndrome is a group of symptoms. The medical specialist can identify an epilepsy syndrome by the type of seizures your child has, when she/he develops them and other identifying signs and symptoms. Children with difficult to control epilepsy may have other problems, such as delayed development and learning difficulties and for this reason doctors often use the term 'epilepsy plus'.

It's always a blow to learn that your child has a condition that may not go away and it's common to go through a period of grieving as you get used to the idea.

Diagnosis

Your observations and knowledge of your child are vital in helping the doctor reach a diagnosis. As well as the usual diagnostic tests, such as blood tests, EEG and brain scans, your child may also be referred for development and behavioral checks to assess her/his overall progress.

Talking it over

You will need plenty of time to ask questions and voice any worries you may have about your child's diagnosis. Your doctor can give you information, advice and reassurance, but in a busy surgery there is not always time for long discussion. Ask whether you can arrange a special appointment or, alternatively, there may be a counselor at the surgery or a special epilepsy liaison nurse at the hospital clinic. You may be shocked to discover your child has epilepsy, but remember - eight out of ten children who have the condition lead trouble-free, enjoyable lives.

Treatment and management ~ Medical treatment

The aim of medical treatment is to control your child's tendency to have seizures, so she/he can get on with life with as little disruption from epilepsy as possible. Avoiding the things which may trigger seizures and taking anti-epileptic drugs are the main ways to achieve this.

Your child will usually need to stay on anti-epileptic drugs until she/he has been free from seizures for at least two years, and in certain cases she/he may need to continue taking anti-epileptic drugs indefinitely. Usually your child will move from the pediatrician (children's specialist) to adult care at around 16 years of age, but this may vary.

Surgery

Surgery is another option which is becoming more widely available for a few children with certain types of epilepsy.

Also see Surgery down below.

Diet

Some children with certain difficult to treat forms of epilepsy may be helped by going on a high-fat diet called a ketogenic diet. Unfortunately it's often difficult to follow and can make your child feel unwell, but it can be worth trying if your doctor recommends it. Always check with your doctor before placing your child on a special diet.

See Ketogenic Diet below.

The family

When you first learn that your child has epilepsy you may be frightened and panicky. You may worry about how her/his epilepsy will effect her/his childhood and be concerned that the anti-epileptic drugs may have side effects, all of which is perfectly understandable. The problems you encounter are unique to your family, and realistically you may have to be prepared for some difficult times. However, most families cope well once they understand what epilepsy involves and learn how to manage it.

Staying positive

Your own common sense, experience and intuition will guide you as to how best to care for your child. Finding out as much as you can about the condition will help you build up confidence in yourself and your ability to respond to her/his needs. Try not to be overprotective or concentrate all your attention on the child with epilepsy.

Other people

You may fear that friends, neighbors and relatives will react badly to the news that your child has epilepsy. Negative reactions are most likely when people are afraid or don't know what epilepsy involves. Openness and honesty are the best ways to combat any stigma surrounding epilepsy and you will probably find that most people are sympathetic and supportive if they know how they can help.

Epilepsy & behavior

Few families - whether they have a child with epilepsy or not - escape behavioral problems at some stage. It's rare for these to be a direct result of epilepsy and it's a myth that there is an 'epileptic personality'. Some children's seizures are made worse by stress, emotional upset or boredom, and in some cases difficult behavior can sometimes be caused by certain anti-epileptic drugs. Sometime, simply missing out on information during an absence seizure or having to miss an outing because of an attack can leave the child feeling frustrated or confused, leading to behavior problems.

If your child does develop a problem, try to find out what is causing it if you can. The professionals who are involved with your child can help too so don't be afraid to talk to them and ask for help.

Bullying & teasing

Some children with epilepsy are picked on at school. This may be because they lack confidence and don't feel able to assert themselves. Signs can include temper tantrums, violence, or sudden misbehavior like playing truant, or nervousness. Talk to your child's teacher if you are worried and make sure your child knows she/he has your support and encouragement to stand up for her/himself.

Helping your child live with epilepsy

Accurate information combined with a positive outlook will help you and your child to enjoy her/his childhood. Tell her/him as much as you think she/he can understand about epilepsy and start showing her/him simple ways to manage the condition. As she/he gets older you can encourage her/him to take increasing responsibility for her/him self. The following guidelines may be useful:

DO -

• accept your child for what she/he is - a unique individual who happens to have a tendency to have seizures - and encourage her/him to do the same support your child and help her/him develop confidence to deal with different situations
• make sure each of your children has a fair share of your time, interest and energy
• concentrate on what your child with epilepsy can do, rather than what she/he can't do
• bear in mind that it's perfectly normal to feel angry and resentful with your children from time to time - however much you love and care for them
• have fun together as a family

DON'T -

• rush in to help unless your child obviously needs it
• restrict your family life because of your child's epilepsy
• treat your child with epilepsy differently from your other children
• allow your child to think of her/himself as 'sick' or use epilepsy as an excuse
• be afraid to ask others to help out occasionally to allow you to regain your emotional and physical energy

Managing a young child

Young children learn by doing so it's up to you to encourage her/his natural urge to explore. Your child will benefit from going to mother and toddler group and, later, playgroup or nursery, but make sure the staff and any volunteer helpers know she she/he has epilepsy and what to do if she/he has a seizure.

Education - 3 to 16

See Teacher's Guide and more down below. 

Most children and young people with epilepsy attend ordinary schools, colleges and universities. School is a central part of your child's life and fortunately she/he should be able to take part in most activities just like any other child. You will probably find that most teachers and helpers are accepting and helpful once they know what is involved in your child's condition. For example they need to know that she/he doesn't have to be sent home every time she/he has a seizure, but can return to class after a suitable rest period. Some schools have a written policy on epilepsy - the school nurse will be able to help you.

Epilepsy & learning

Most children with epilepsy are just as capable of learning as other children, and many do very well indeed. However, it's a sad fact that some don't achieve as much as they could at school. Your child's lack of attainment may not be directly linked to epilepsy at all, so if you suspect that she/he is not progressing as well as she/he could, have a word with the teacher and the doctor to try and pinpoint the problems.

Learning difficulty

Some children with epilepsy do have learning difficulty (the term used to describe a child who finds it harder to learn than most children of the same age, or who has a disability which makes it difficult to make use of the school's facilities). In this case your child will need special help to reach her/his full potential.

Fortunately, most learning difficulties are mild and overcome quite quickly, but sometimes they last longer and are more serious. Your child is most likely to experience serious learning difficulty if she/he has severe, uncontrolled seizures and/or physical and mental problems as well as epilepsy, in other words 'epilepsy plus'.

Special educational needs

If your child is falling seriously behind other children of the same age, or if you think she/he isn't getting all the help she/he needs at school she/he may have special educational needs. This involves collecting information about your child's progress from you, your child's teacher, an educational psychologist and anyone else who can help give a picture of your child's needs.

Should my child go to a special school?

Most children with special educational needs can be educated in an ordinary school, perhaps with the help of outside specialists, but sometimes a child with severe learning difficulties may do better at a special school, where her/his needs can be met more easily.

Adolescence to adulthood

All adolescents need help in learning to accept and like themselves as they are. It's very common for teenagers with epilepsy to use their condition as a peg on which to hang their anxieties and discontents, for example by rebelling over taking their tablets. Worrying though this is, try not to make it into a big issue. The more your teenager understands about her/his medication the better able she/he will be to make responsible decisions.

With your love and support your teenager can learn that epilepsy doesn't have to rule her/his life. Provided they are sensible there's no reason why young people with epilepsy shouldn't take part in sports, traveling, going to discos and having boyfriends or girlfriends.

As a parent it can be hard to acknowledge that your children have adult desires. However, at some stage you will need to discuss sex and relationships. Boys and girls need to know that epilepsy won't stop them enjoying sex. Girls should be aware that medication can affect absorption of the contraceptive Pill and may need to talk this over with the doctor. And both sexes need to know that there's absolutely no reason why they can't have a partner or children.

Above all your teenager needs your understanding. The strong need to belong, which she/he shares with all teenagers, may make it especially hard when she/he can't be like her/his friends because of problems linked to epilepsy. For instance, she/he will only be able to learn to drive if she/he has been seizure-free for a year - this can be very isolating when all your friends are learning to drive. Learning to deal with such issues - with your support - is all part of learning to be independent and manager her/his own epilepsy and to recognize that epilepsy doesn't have to rule her/his life.

Preparing for adulthood

Use the following checklist to make sure your teenager has all the information she/he needs:

• Does she/he know what services can help and how to find them?
• Does she/he understand why she/he needs medication and what to do if her/his seizures get out of control?
• Does she/he have responsibility for her/his own tablets? She/he needs to carry a spare supply in case she/he doesn't get home.
• Does she/he know how to organize her/his own medical care?

See contraception, pregnancy and self management down below. 

Education - 16 plus

Later on your child will need to decide whether to go on to further or higher education. It's a good idea to encourage her/him to aim as high as possible in order to compete in the job market when the time comes - an important factor for people with epilepsy.

Many further and higher education institutions today make a real effort to cater for their students with special needs of any kind, giving them priority for a place in a hall of residence, for example.

There's no reason why your child shouldn't enjoy every aspect of student life. She/he will need to decide who to tell about her/his epilepsy and what to tell them. Epilepsy Action believes that honesty is the best policy. Being open avoids embarrassment and enables her/him to get any help she/he needs if the occasion arises; it can also help quash some of the unhelpful myths about epilepsy.

Like all students, your child will need to decide for her/himself where she/he stands on matters such as alcohol, street drugs and how she/he conducts her/his social life. In making such choices, she/he will, of course, need to take into account how these are likely to affect her/his epilepsy.

If she/he encounters particular problems linked to epilepsy, she/he can discuss them with a personal tutor or student counselor. And, of course, Epilepsy Action is always on hand to provide information on all aspects of epilepsy.

Febrile Seizures

Febrile seizures, also known as febrile convulsions, are the immature brains response to a rapid rise in body temperature. In medical circles, the term febrile is used to define a body temperature of 38 degrees C or above.

Who do they affect?

Seizures triggered by febrile illnesses are common in children between the ages of 6 months and five years.

What causes them?

For many children the fever will be caused by a minor infection such as a sore throat or ear infection, but sometimes more serious conditions such as meningitis or encephalitis can also cause a rapid rise in temperature and trigger a febrile seizure.

Who is at risk?

Generally, children under the age of 5 years. It is estimated that between 2-4 per cent of all children under the age of 5 will experience at least one febrile seizure. Children of parents with a history of febrile seizure are four times more likely than children in general to have febrile seizures themselves. Brothers and sisters of children with febrile convulsions have an 8 per cent risk of seizures when experiencing a febrile illness. While febrile convulsions are not considered to be epilepsy, children of parents with epilepsy have a 5 per cent chance of developing febrile seizures. Boys appear more vulnerable than girls.

Are there different types?

Over 75 per cent of febrile seizures are said to be simple, that is, lasting less than 15 minutes and generalized which means that a large part, or even the whole of the brain, is involved. The remaining 25 per cent are termed complex. This means they involve only a small part of the brain or they are repeated in the same period of acute illness, or prolonged, (lasting more than about 15 or 20 minutes). This type may occasionally cause some temporary paralysis, known as Todds Paresis, afterwards.

How are febrile seizures managed?

Witnessing any convulsion can be a frightening event. They usually happen very suddenly, often when a child has seemed only slightly under the weather. As most people do not know how to cope with the initial seizure it is not uncommon for medical advice to be sought. For the first seizure this is often from paramedics, who generally take the child to hospital for assessment. Tests will be carried out to determine the cause of the rise in temperature and treatment, if any is needed, will be started. Once serious illness has been ruled out the child may be discharged and the parents given advice on temperature reducing strategies for future illnesses. This information may also be given by the family GP or Health Visitor.

As febrile convulsions are not usually considered to be epilepsy, the use of long-term anti-epileptic medication is not seen to be beneficial. However, for children who have prolonged febrile convulsions, rectal diazepam may be given. This drug is designed to terminate prolonged seizures and may be administered by parents and other care-givers. If this is the case, it is important that the prescribing doctor issues clear guidelines about how and when it should be used. General information about the administration of rectal diazepam is also available from Epilepsy Action.

Do febrile convulsions cause epilepsy?

While febrile convulsions are not considered to be epilepsy, they are associated with a 2-5 per cent chance of developing epilepsy at a later date. For complex febrile convulsions that figure rises to around 10 per cent .

It must also be considered that some young children who already have a predisposition to epileptic seizures will have seizures when ill, even with minor colds and infections. These seizures need to be differentiated from the seizures purely triggered by a high temperature. For this reason, a careful assessment is needed, as children with epilepsy are more likely to be given anti-epileptic medication than children with febrile seizures only.

Will a febrile seizure affect a childs development?

The development after a febrile seizure will closely reflect what it was before the attack. This means that a child who was not developmentally delayed before a simple febrile convulsion is unlikely to develop problems after the seizure. Occasionally, a febrile seizure is the first sign of some other illness or condition. For these children the outlook will obviously depend on the nature of that illness or condition.

Epilepsy Surgery

Surgery for epilepsy is advancing all the time, with new techniques, new equipment and an increasing number of surgeons interested in this area of epilepsy treatment. The result has been a steadily growing number of people undergoing this surgery and many of those people going on to enjoy a much better quality of life.

The success of modern surgery for epilepsy has caused a widespread interest in this type of treatment, with people seeing an operation as preferable to a lifetime on medication. However, only a small number of people with epilepsy are suitable for surgery and, even for those that are, there are no guarantees of success.

This page looks briefly at some aspects of surgery as a possible treatment for epilepsy.

Suitability

The first thing a doctor has to establish when considering surgery as an option is to establish the patients suitability. Will surgery be possible and, if so, will it be beneficial?

There are a number of different types of surgery for epilepsy but the most common is the removal of a small part of the brain which is the underlying cause of the epilepsy; the focus. During this type of surgery, the more tissue that is removed  the higher the risk to the patient. Therefore, only those patients whose seizures consistently begin in one small area of the brain are suitable for surgery. Sadly, this means that for the many people with epilepsy whose condition cannot be traced to a specific area of damaged tissue, surgery is not currently an option.

Another consideration is the nature of the persons epilepsy. Surgery is always a risk so the benefits have to be significant. For this reason, doctors tend to only recommend those patients whose epilepsy has a very negative impact on their lives. These tend to be people who still have regular seizures despite trying a variety of medication. The doctor will want to know that surgery will greatly improve seizure control.

It is the quality of a persons life that will be a main factor in the decision. In some people, a relatively small number of seizures can have a dramatic impact on their lives while others can tolerate a much higher number of seizures without it significantly affecting their well being.

This decision is only the first step in what can be a long and frustrating journey.

Pre-surgery tests

Because the surgeon will be removing a part of the brain, it is vital that as much as possible is known about the patients brain and their epilepsy before surgery takes place. After many tests the patient needs to be aware that they could then be told that surgery is not possible - not an easy thing to accept after hoping for change.

While most people with epilepsy will have had a standard EEG test, they will be asked to go into hospital for a much more detailed version. The aim is to study the person having several seizures while the EEG is connected. This usually involves coming off medication and having the EEG continually recorded, sometimes for several days. In some instances, the surgeon may have to insert special electrodes onto the surface of the brain itself, although this is only done in a small number of cases. This involves using natural holes in the skull or having to create them. Throughout this type of test the patient receives a great deal of support and help from the hospital staff.

The surgeon will also want to have an up-to-date image of the patients brain and this means having an MRI scan (magnetic resonance imaging -- see below). This machine creates a picture of the brain which put together with the results from the EEG often enables the surgeon to pinpoint the exact part of the brain which is causing the epilepsy.

These tests will need to show that a single area of only one side of the brain is causing seizures. Some functions of the brain are shared by both sides of the brain, so removing one part on one side does not usually lead to a loss of that function. However, other functions are controlled only by one side of the brain, and the surgeon will need to be confident that these areas are not going to be damaged during any operation.

A new test, recently developed is DTI (diffusion tensor imaging - see below). This measures the actual movement of water in the brain, detecting areas where the flow of water is disrupted. DTI is in very early stages of development but offers an alternative investigatory method in cases where an MRI scan does not detect any abnormalities.

Other tests include PET (positron emission tomography) and SPET (single positron emission tomography), which involve injecting tiny traces of radio active substances into the body and watching which part of the brain they reach.

Other tests are undertaken, for example functions like memory are tested. This can involve the Wada Test or the Carotid Amytal Test and involves anaesthetizing half of the brain and can be quite an ordeal for the patient.

All of these tests can be worrying or distressing for the patient, but the medical teams offer a great deal of help and support throughout.

After the tests the doctors will know whether an operation is the right way forward, offering the patient the best option for the future.

The assessment of any risks will be undertaken extremely carefully and will be discussed with the patient.

The operation

The type of surgery that a patient undergoes will depend greatly on what the surgeon hopes to achieve. The following is a list of some operations:

1. Selective amygdalo hippocampectomy - the removal of two structures in the temporal lobe which are commonly the site of seizure activity. Sometimes just the hippocampus part of the structure is removed.
2. Temporal lobectomy - a larger part of the temporal lobe is removed. This tends to be mainly the right side as the left side of the temporal lobe controls speech.
3. Sub-pial resection - fine cuts are made in the motor areas of the brain that do not affect the motor function but do prevent the spread of seizures.
4. Hemispherectomy - sometimes used to treat very severe epilepsy in children with damage to one whole side of the brain. The damaged side of the brain is removed.
5. Corpus callosotomy - again sometimes used to treat children with very severe epilepsy, this operation involves cutting the fibers that connect the two halves of the brain.
6. Removal of a lesion such as a tumor or a cyst.

After surgery

Despite the lengthy and very difficult nature of brain surgery, most patients make a rapid recovery and are usually up and about within a couple of days. Between eight and fifteen weeks later, most people are able to return to work. Some aspects, like waiting for the nerves that supply sensation to the skull, may take some time to recover.

The results

Some people may experience seizures just after the operation due to temporary swelling. This does not mean that the operation has failed.

Depending on the persons own doctor, it may be some time before the patient can start reducing their medication. However, many patients notice a dramatic reduction in the number of seizures, many finding that their seizures appear to have stopped. They can then look at reducing or stopping their medication in consultation with their doctor.

One consequence of successful surgery that may surprise some people is the difficulty in coming to terms with life without seizures. Emotional reactions to this life change are common and can include quite severe temporary depression. Friends and family can also find it difficult to adjust to the persons new found independence. This type of reaction will depend on how long the person has had epilepsy prior to having surgery.

As with most surgical techniques, there are no guarantees. Epilepsy surgery is no exception and a small number of people will find that surgery has not helped.

Magnetic Resonance Imaging (MRI)

Magnetic Resonance Imaging is a test which can be used to establish whether there is an underlying cause for a persons epilepsy.

Explained briefly, the test involves the person lying within a large powerful circular magnet. Images are produced by changes in the magnetic field, which are then analyzed by computer. These very high quality computer pictures may highlight any lesions, scars, tumors or malformations which may be the underlying cause (focus) of the epilepsy.

The first MRI scanner became available in the UK in the early 1980s. The machines are costly and therefore tend to be located in the larger hospitals. Some of the scanners are much more powerful than others - the more powerful the machine, the better the quality of the image.

Not everyone has an underlying cause for their epilepsy, so carrying out an MRI scan may be irrelevant in many people with the condition and of little benefit to their ongoing treatment. Should anyone with epilepsy be concerned that there may be an underlying cause for their epilepsy and wish to have an MRI scan, they should discuss it initially with their GP. If necessary, the GP can arrange for a referral to a specialist in epilepsy for an assessment. MRI's are used to investigate many medical conditions other than epilepsy and the waiting lists can be very long. Specialists are only likely to refer those who, in their medical opinion, would benefit from an MRI scan.

Further research on the causes of epilepsy is vital in order to improve the treatment and quality of life for people with epilepsy. The MRI scanner is one of the tools in research development and Epilepsy Action supports the promotion of investigatory methods for epilepsy. We continue to lobby the Department of Health to improve the medical services for people with epilepsy including increased funding of research and resources.

EEG (Electroencephalogram)

EEG is short for electroencephalogram, and is the name of an important investigation carried out on most patients suspected of having epilepsy. It tells us about the activity of the brain at any given time. It may show abnormal activity of the sort most commonly found in epilepsy and may show that part of the brain is working abnormally. The EEG records the ever changing but tiny electrical signals coming from the brain which are picked up by electrodes placed on the scalp. These electrodes are either small silver discs or padded silver rods, attached to the scalp using a harmless glue, sticky tape, or held in place by a rubber cap.

Some people confuse ECT with EEG. ECT is a form of treatment in which an electric current is applied to the head, but in an EEG there is no current passing into the head, merely tiny electrical signals coming out of the head. ECT is a form of treatment used by psychiatrists. An EEG is a harmless investigation.

How it works

About 20 electrodes are placed over the scalp and connected by wires to the EEG machine. The original signals from the brain are very small (measured in millionths of a volt), and the EEG machine increases the size of these electrical signals so that they can be recorded on paper or computer, and this produces a permanent record which can be interpreted by the EEG Consultant.

During the EEG recording the patient sits or lies down on a couch, and is asked to relax and keep still because movements of the muscles or eyes can cause large signals which may obscure the signals coming from the brain. During the test, which usually lasts less than an hour from start to finish, the patient will be asked to open or close their eyes and, at one point, to breathe deeply for some minutes, because this may increase or reveal abnormalities. They will also be asked to look at a flashing light, because some people's brains are sensitive to flickering light and this may be a reason for their having had a seizure (photosensitive epilepsy ).

In most people it is usual for the flashing light to produce activity at the back of the brain at the same rate as the flash. If the flashing light produces an abnormal discharge in the EEG, the light is immediately switched off, so there is no risk of a seizure occurring.

Some patients, especially those whose seizures have occurred during sleep or just after waking, may have a longer recording during natural sleep or during sleep induced by a sleeping tablet.

The ambulatory EEG

The diagnosis of epilepsy is made from an account of the seizures given to the doctor by the patient and by someone who has actually seen a seizure. Sometimes there is doubt about the nature of the seizure, in which case it is possible to record the EEG over a period of one or more days, using a small portable EEG recorder which the patient wears on a waistbelt. Recording can thereby be made while the patient carries on normal daytime activities, and during sleep.

When an attack occurs the EEG tape recording of the event can be viewed later on a special machine in the EEG laboratory. The patient keeps an account of daily activities, so that it is possible to time all events accurately and relate them to the EEG recording made at the time. This special investigation is called ambulatory EEG monitoring, and is useful in diagnosis, in relating EEG abnormality to the patient's daily activities and also in monitoring the effect of drugs, as well as providing a complete recording of EEG activity during sleep.

Other special EEG techniques may be used in investigating patients referred for possible brain surgery in specialized units.

Interpretation of the EEG

The diagnosis of epilepsy is made from the history and not from the EEG. Further tests may help in confirming a diagnosis, may be a guide to treatment, and have sometimes provided information as to the possible cause of the epilepsy. The EEG gives information about the working of the brain, but not its structure. The CT and MRI scans give information about structure.

A normal EEG does not exclude epilepsy, and an abnormal EEG does not necessarily indicate epilepsy. Certain patterns are commonly associated with epilepsy, especially spike and wave, but since this EEG pattern is inherited it may be found in people who do not themselves have epilepsy, if they have a near relative with epilepsy.

A single EEG records brain activity for only a short period of time, and during this time there may be no abnormality. Thus, several EEGs may be needed and it may be necessary to record the EEG at times (such as before a period) when the patient is known to be liable to have seizures. Repeated EEGs may also be made to check progress in response to treatment.

In patients with generalized seizures (absences, primary tonic-clonic seizures, myoclonic jerks) EEG abnormality is usually seen on both sides of the brain. In partial (focal) epilepsy, abnormality may be seen in a local area and there may also be some abnormality of the background rhythms. Interpretation of children's EEG records is more difficult than adults, because the EEG alters with age, an adult pattern being usually found by the age of 15 years.

There is no need to stop medication before having an EEG, but one group of drugs, the benzodiazepines (Valium, Mogadon etc) affect the EEG and may prevent the appearance of bilateral abnormalities (they do not affect focal abnormalities). This group of drugs should therefore not be taken for two weeks before an EEG, but the decision about stopping drugs must only be made by a doctor.

The Ketogenic Diet

The ketogenic diet is a high fat, adequate protein, low carbohydrate diet designed to mimic many of the biochemical changes associated with prolonged starvation. First developed in the early 1900s, and successfully used for the treatment of seizures in children during the 20s and 30s, the ketogenic diet was then gradually forgotten as new anticonvulsant medications were developed. The ketogenic diet has recently been rediscovered and is achieving increasingly widespread use. Its modern day role as alternative management for children with difficult-to-control epilepsy is currently being re-defined.

The ketogenic diet is not a fad or a quack diet, but rather is an alternative medical treatment for children with difficult-to-control epilepsy. The ketogenic diet should only be used under the supervision of a physician and a dietician.

Background

Fasting to achieve control of seizures was described in both the Bible and during the Middle Ages, but it was only during the early 1920s that scientific papers first appeared describing the beneficial effects of prolonged fasting for children whose epilepsy could not be controlled by the few medications then available. These papers claimed that starvation, drinking only water for 10 to 20 or more days, could result in control of seizures for prolonged periods of time.

During this era, when the metabolic effects of diabetes were also being studied, it was noted that the biochemical effects of fasting could be mimicked by eating a diet high in fat, but with insufficient carbohydrate to completely burn the fats. The resulting ash from the incompletely burned fat consisted of ketones in the blood. Multiple clinical papers during the 1920s and 30s reported that approximately a third of children taking this ketogenic diet had their seizures largely controlled, a third had a substantial improvement in seizure control and a third received no substantial benefit. The mechanism(s) by which these ketone bodies, principally beta hydroxybutyric acid, decrease, or even, completely control, seizures in children remain(s) unknown even today.

After the discovery of phenytoin in 1938, attention turned from the ketogenic diet to the development of new anticonvulsant drugs. As new drugs were developed, the ketogenic diet was used less frequently, and since fewer dieticians were trained in the subtleties of the diet, it was used less frequently and often less successfully.

In 1994, the successful treatment of a child with difficult-to-control seizures led to widespread media attention and a re-awakening of interest in the diet in the United States.

What is the ketogenic diet?

The ketogenic diet is a high fat, adequate protein, very low carbohydrate diet which is carefully and individually calculated for each child. Calories are restricted and depend on the age and activity of the child. If properly calculated, the child should neither gain nor lose significant weight, but should grow normally for his/her stature and the weight should remain close to the ideal weight for height. If the child is overweight, calories are limited until the ideal body weight is approached. Fluids are also restricted, although for reasons which are less clear. The diet provides approximately 90 per cent of the childs caloric requirement as fat (cream, butter, mayonnaise), one gram per kilogram of body weight as protein, and minimal carbohydrate intake. The diet must be supplemented with vitamins and calcium.

What does the diet do ?

The diet was designed to simulate many of the metabolic effects of starvation. During starvation, the body first uses its store of glucose and glycogen, then begins to burn the stored body fat. When there is not sufficient glucose available, the fats cannot be completely burned and ketone bodies (acetoacetate and beta hydroxy butyrate) are left as the residue of incompletely burned fat. The ketogenic diet provides exogenous fats (fat from outside the body) for the body to burn, but limits the available carbohydrate so that ketone bodies build up. It is the high level of these ketones which appear to suppress seizures.

So what do these children eat?

The children are only permitted to eat the prescribed, carefully calculated meals. While the portions are small, the ketosis suppresses appetite and thirst and after a short period of adjustment children are rarely hungry. While a common reaction to the concept of such a high fat diet both from physicians and others is "Yuck", well prepared ketogenic meals can be both tasty and appealing.

A typical breakfast might include a mushroom omelet with several slices of bacon and hot chocolate made with 36 per cent cream. Lunch might include celery stalks filled with peanut butter or cream cheese, lettuce with mayonnaise and a slice of tomato, and a caffeine-free diet soda. Dinner might include a weighed portion of hot dog with ketchup or mustard, lettuce and mayonnaise, a whipped cream sundae with a strawberry and a diet soda.

How effective is the diet?

While the effectives of the diet has been documented in many older studies, it remains equally effective today in children with difficult-to-control seizures, despite the introduction of many new anticonvulsants. A current study from Johns Hopkins (published in Pediatrics, December 1998) evaluated the effectiveness and tolerability of the diet in 150 consecutive children.

These children averaged more than 400 seizures per month before the diet and had been tried on an average of more than six different anticonvulsants. The outcomes are shown below:

	Seizure control	at 6 months	at 12 months
Number initiating the diet: 150	over 90%	48 (31%)	41 (27%)
	50-90%	29 (19%)	30 (20%)
	under 50%	29 (19%)	8 (5%)
Number continuing the diet		106 (71%)	83 (55%)

It should be noted that 71 per cent of those starting the diet remained on it for more than six months and more than half remained on the diet for one year. If the diet was effective in decreasing the seizures it was, in general, well tolerated, and the most frequent reason for discontinuing the diet was that it was insufficiently effective to warrant the dietary restrictions. The diet was equally effective at different ages and in children with varying seizure types.

Frequently asked questions about the diet

Who should try the diet?

The ketogenic diet is an alternative therapy for children who have difficult-to-control epilepsy. We have defined difficult-to-control epilepsy as having more than two seizures per week despite the appropriate use of more than two anticonvulsant medications. The diet has not been adequately studied in adults or in children under one year of age. Parents who think that the diet may be appropriate for their child should consult with their physician. The diet should never be attempted without medical supervision.

Will my child be able to stop taking anticonvulsant medications?

Our goal is to make all children on the diet both seizure-free and medication-free. Unfortunately this is often not possible. While some patients are able to gradually discontinue medications while on the diet, many do not become seizure-free, and many require some continued medication.

Can my child have any other medications while on the diet? What about antibiotics?

Many childrens medications are compounded in sugary syrups. We teach parents to be vigilant in reading labels of all medications, and to avoid all preparations which contain carbohydrates. Carbohydrates include all substances which end in -ol or -ose. The diet is often very sensitive to even small amounts of these carbohydrates. For example, we have found that suntan lotion, which contains sorbitol as its base (note the ...ol) can be absorbed through the skin and lower the ketone level resulting in seizures.

What does the child do on birthdays? On holidays? For snacks at school?

Parents become quite creative. Birthday cakes can be cheese cake. At Halloween one family allowed the child to trick-or-treat and then purchased the candy from the child who used the money to buy a toy. This can also work well for parties and for school. Children as young as four have been taught to say, "No thank you, Im on a magic diet".

Does this high fat diet cause arteriosclerosis? (Hardening of the arteries)

Studies in progress suggest that only a small percentage of children on the diet have a substantial increase in their cholesterol and triglycerides. The long term effects of the diet on heart disease and stroke are unknown, but few children remain on the diet long enough for this to become a problem.

Dont children gain weight on the diet?

No, they should not gain significant weight. The number of calories is carefully tailored to the needs of the child. If the child is gaining too much weight, then we decrease calories. Children appear to grow normally and should only gain weight in proportion to the increase in height.

How long must children remain on the diet?

Children whose seizures are completely controlled on this diet often discontinue it after being seizure-free for two years. Others continue the diet as long as they find it useful. If the diet is stopped, or the ratio decreased, and the seizures return, then the diet can either be re-instituted or the person can re-start medications.

How does the diet work?

It appears that the high fat intake combined with carbohydrate and caloric restriction result in ketosis. The current standard of care requires that the urine remains 4+ (160-180mml) for ketones. Recent evidence suggests that the serum ketone levels may be far more critical than those in the urine. While 4+ urine may be necessary for seizure control it may be insufficient for optimum control and calories may need to be further restricted or the ratio of fat to protein and carbohydrate may need to be increased. Studies of serum levels of ketones and their correlation with seizure control are in progress.

How the ketone bodies suppress seizures is unknown, but currently an area of investigations. However, suppression of ketosis by the administration of carbohydrates may quickly result in a recurrence of seizures.

Future areas of research

The success of the diet in decreasing, and sometimes controlling, difficult-to-control seizures has re-awakened interest in how the diet works, and has started researchers looking at animal models by which it can be studied. With animal models it will be possible to study how the ketone bodies modify seizure thresholds, and the mechanisms by which the diet controls seizures. Perhaps eventually, when we understand the mechanisms, we can develop a medication which will simulate the effects of the diet.

Clinical research may also alter how the diet is administered. When we are able to monitor blood levels of the ketones rather than just the urine, we may be able to better adjust the diet to achieve maximal ketosis. We may understand that higher levels of ketosis give better seizure control. We may learn how to modify the diet so that we decrease the incidence of kidney stones. We may also learn more about the effects of the diet on serum lipids, and about the long term effects of the diet. Hopefully all of these efforts over the coming years will result in better seizure control for those children with difficult-to-control epilepsy.

The full results of the Johns Hopkins study can be found in the December 1998 issue of Pediatrics.

No attempt should be made to change a childs diet without medical supervision.

Epilepsy - A Teacher's Guide Epilepsy is the second most common neurological disorder after migraine. 75% of people with epilepsy have their first seizure before the age of 20. It is likely that most teachers, during their careers, will have several children with epilepsy in their classes. The role of the teacher is crucial. If epilepsy is dealt with calmly and reassuringly, the child will benefit and their classmates will develop a healthy and accepting attitude towards epilepsy. What epilepsy is and the different types of seizure are covered elsewhere on this site. It must always be remembered that there are some 40 different types of seizure and being able to recognize the basic types may be vital in helping a child fulfill his or her potential and be given appropriate treatment. For example, absence seizures can look as if a child is simply day-dreaming when in reality they are having a seizure, missing out on learning and possibly becoming the victim of mockery from their classmates. One type of seizure which teachers may help detect first are sub-clinical seizures, which cannot be seen. However, they may be indicated if a child's attainment drops significantly or the standard of work is unaccountably below expectation. Where seizures are suspected, the matter should immediately be brought to the attention of the child's parents. The teacher's role The teacher can be a great help in the diagnosis of the type of epilepsy a child may have, through an accurate written description of the seizures. Communication between teacher, parents and doctor cannot be stressed strongly enough. This aids not only diagnosis but also prevents the child becoming inhibited or withdrawn or experiencing unnecessary learning problems. Classroom first aid In the case of absence seizures, understanding and a matter-of-fact approach are really all that are needed. It helps to be aware of the possibility of mockery when the seizure has passed and the need for the child to catch up on any information missed during the seizure. If a child has a tonic-clonic seizure, classmates will look to the teacher for guidance. Calmly reassure the other children and ensure that the child having the seizure cannot harm themselves. Only move the child if there is danger of sharp or hot objects or electrical appliances. Then follow these simple guidelines: Cushion the head with something soft e.g. a folded jacket, but do not try to restrain movements.  Do not put anything at all between the teeth or in the mouth.  Do not give anything to drink until the seizure is over.  Loosen tight clothing around the neck but remember to do this with care as it may frighten a semi-conscious child.  Do not call for an ambulance or doctor unless the seizure lasts more than a few minutes (status epilepticus)  As soon as possible, turn the child onto their side in the semi-prone (recovery/unconscious) position, to aid breathing. Wipe away saliva from around the mouth.  Be reassuring and supportive during the confused period which often follows this type of seizure. The child may need to rest quietly or sleep for a while, preferably somewhere private.  If there has been incontinence cover the child with a blanket to prevent embarrassment. Arrange to keep spare clothes at school if this is a regular occurrence. It is not usually necessary to send a child home after a seizure, but each child is different. If the teacher feels that the period of disorientation is prolonged, it might be wise to contact the parents. Ideally, a decision will be taken in consultation with the parents when the child's condition is first discussed and a procedure established. Emergency care Although the average convulsive seizure is not a medical emergency there are two exceptions of which a teacher should be aware. When a seizure shows no sign of stopping after a few minutes OR  A series of seizures take place without the child properly regaining consciousness in between. If this happens it is called Status Epilepticus - one of the rare medical emergencies associated with epilepsy which requires immediate medical attention. A five minute seizure does not itself constitute an episode of status epilepticus and it may stop naturally without treatment. However, emergency precautions after the five minute mark has passed will ensure that prompt attention will be available if a seizure does continue. Such precautions are especially important if the child's medical history shows a previous episode of status epilepticus. Emergency care IS appropriate if a child who is not known to have epilepsy experiences a convulsive seizure - even if the seizure stops naturally after a few minutes. In such a case, the condition may be caused by some underlying infection or metabolic problem. Both medical staff and parents need to be informed of any events of this nature. Medication Fortunately, anti-epileptic medication gives most children the chance to lead normal lives. There are many different drugs but they all take the form of tablets, capsules or, in the case of small children, syrup. This is usually only taken night and morning, avoiding the inconvenience of taking pills during school hours. Whatever the prescription, it is essential that the child takes the correct dosage at the right time. If medication has to be administered during the day, the support of the school and teacher are most important. If a child starts having an increased number of seizures or appears drowsy, over-active or inattentive, it may be that the medication needs adjusting. A teacher recognising such behavior is advised to discuss the matter with the parents so that they, in turn, can discuss it with the child's doctor. Teachers, nurses, special education teachers and support personnel also need to be aware of the learning disorders sometimes associated with epilepsy. Only then can they work effectively with these children and enable them to fulfill their potential. School activities Placing restrictions on children with epilepsy will only serve to make them feel and appear different. With adequate supervision no activity need be barred, although it is unwise to allow a child to climb ropes and wall bars if he has a history of frequent, unpredictable seizures. Swimming is to be encouraged and should cause no problems provided there is a qualified and informed life-guard in, or adjacent to, the water to affect an immediate rescue should it be necessary. Many schools adopt the 'buddy' system for all children, which means that special attention need not be drawn to the child with epilepsy. Careers With the right approach, qualifications and skills, epilepsy is not a major barrier to employment. Teachers offering careers guidance to young people with epilepsy need to be familiar not only with their academic and social abilities, but also with the type and frequency of their seizures. Essential information Epilepsy Action recommends that teachers find out as much as possible about a child's epilepsy from the parents. Some questions to ask could include: what type of seizures a child has how long they last and what they look like what first aid is appropriate and how long a rest the child may need any particular conditions or events that might trigger a seizure how often medication is taken and what side-effects may be experienced whether the child has a warning (aura) before the seizure what activities, if any, the parents or doctor require limiting whether the child has any other medical conditions. Finally, it can be helpful to know how much understanding the child themselves has of their condition and its treatment.

Telling Your Child

As a parent or carer protecting a child from harm is a natural instinct. When a child has a medical condition this need to protect becomes even more acute, sometimes to the point of being over-protective. However, unless a child understands their own condition they are likely to come to all kinds of wrong conclusions as they try to work it all out.

The childs view

Small children have very vivid imaginations. Although most childhood fantasies are a lot of fun, and quite harmless, it is possible for a child to frighten himself with what he makes up. Scary fantasies often arise when a child is anxious about something he doesnt understand, but luckily they tend to disappear when a proper explanation of the situation is given.

We often overlook the fact that a child with epilepsy is likely to make up fantasies about his seizures unless they are properly explained to him. Cases have been reported in which children associated seizures with death, or with broken or missing brains, and with punishment for being bad. These may be extreme cases, but they do demonstrate how a child can misunderstand his condition and become very anxious about himself.

Explaining seizures

It is important that children with epilepsy should be given factual information about seizures so that they can understand. This will help to prevent undue anxiety, and will lead to a better acceptance of the condition and of its treatment.

Parents should themselves insist on a full explanation from the doctor of the type of epilepsy and details of the treatment. They should also ask the doctor to explain the condition in simple terms to the child, even when he is very young, and to stress the need to take the medication every day.

At home the child will probably ask questions about his seizures and treatment. parents need to make sure they have a good understanding of epilepsy, so that they can provide correct answers and reassurance. Adequate information about their childs epilepsy will also help parents to cope better with their own anxiety and concern.

Explaining seizures to a very young child who doesnt know much about his own body or how it works can be quite difficult. We think the description given by a seven year old named Peter of his own seizures would be helpful even for very young children.

"Its like when youre watching TV and the picture gets blurry and fuzzy for a minute and then goes back on again OK. Thats what it seems like with me."

You can add that this happens to lots of people, children and grown ups, and the medicine you take helps to keep the picture clear.

An older child can be given a more detailed explanation along the following lines of:

"Our brain, which is inside our head, controls everything we do: walking, talking, seeing, hearing, even sleeping. Everyone has a little bit of electricity in their brain, and this electricity helps the brain send messages to our body to tell it what to do. Sometimes people make too much electricity in their brain and the messages get all mixed up. Thats what is happening when you have a seizure. its a bit like the way static can make the picture on the TV set go all fuzzy or disappear for a minute. The tablets you take help to stop the electricity increasing so that you wont have a seizure so often. Lots of people, both children and grown ups, have this problem with too much electricity, and they all take tablets to keep it in order."

Epilepsy and Employment

Most people with epilepsy today manage to hold down a job successfully. True, epilepsy can sometimes pose problems at work and some people with epilepsy may find it hard to obtain a job that uses their skills and experience to the full. However, very few jobs are barred by law to people whose seizures are under control and with patience, perseverance and a positive outlook, you should be able to find work that you enjoy and that uses your skills and talents.

Looking for a job

Your options will depend on your skills and talents as well as the nature of your epilepsy. If your seizures are well controlled with medicine or if you only experience sleep seizures, your choice will be wider.

Where to search for a job:

• Advertisements
• Recruitment agencies
• Personal or official contacts
• Approaching individual companies

Some practicalities

• Insurance: Your employers Liability Policy should cover you as long as s/he took your epilepsy into account when allocating work.
• Pensions: As long as you are fit to work you should be eligible for a pension scheme if one is available.
• Unions: If you believe you are being discriminated against because of your epilepsy contact your union. Most are committed to equal opportunities for people with disabilities. 

Applying for a job

Once you have found something suitable, send a letter and resume, or a neatly filled-in application form supplying the information asked for.

You may need to tell any future employer about your epilepsy, depending on the job you are applying for and the nature of your epilepsy. Should you feel you need to inform a prospective employer of your epilepsy, there's no need to reveal this when you apply for a job unless a question on the form specifically asks you to do so. In this case, a letter from you doctor may help to clarify how your epilepsy would or would not affect you. Unfortunately, some employers will have mistaken ideas about the nature of epilepsy, so it's often more helpful to broach the subject face to face if you are called for an interview. It is vital, however, to be honest with yourself about the nature of the seizures and to be realistic about how they might affect your ability to do the job now. Don't base your application on how you hope things might be in the future.

Dealing with rejection

In these days of fierce competition on the job market everyone encounters some rejections. Dont automatically assume you have been turned down because you have epilepsy - it could be that your qualifications and abilities dont fit the job you applied for, or you may simply have been unlucky. Before applying for any job consider the following:

• Do you have the right sort of practical experience?
• Are your qualifications suited to this job?
• Do you have the right personal qualities for the job?
• Is your epilepsy likely to affect your ability to do the job?

Remember: being seizure-free is not as important as being well qualified for the job.

Getting an interview

Some things you can do to prepare for an interview:

• Find out as much as you can about the job and the firm offering it
• Think about the qualities needed and how you can show that you possess them
• Practice the interview with a friend
• Try to anticipate the sort of questions you may be asked about your epilepsy and think about how you will answer them.

At the interview

First and foremost your aim is to convey a good impression of yourself and convince the interviewer that you are capable of doing the job.

In general:

• Dress neatly
• Arrive promptly
• Try to establish a good relationship with the interviewer(s)
• Be polite
• Try to appear relaxed and natural

Talking about your epilepsy

The choice is yours whether you want to tell any prospective employer about your epilepsy. You could wait until the interview or once the position has been offered before telling an employer. However, if your epilepsy may affect you during your working hours, it would be helpful for you to talk to your employer about it at some stage before starting work. You should also bear in mind that under the Health and Safety at Work Act it is necessary to declare your epilepsy if the job you are to do is a health and safety risk. For example, if the job could be potentially dangerous and you experience a seizure would you be a danger to yourself or your colleagues? You should also realize that in order to be sure you are covered by an employer's insurance, the employer should be aware of your epilepsy when allocating work. It may be, however, that you feel it is not necessary to declare your epilepsy at the onset because your epilepsy is well controlled and will in no way affect your ability to do your job safely and effectively. However, should your seizures become more frequent or severe, and you feel you need a reasonable adjustment to help you, you can change your mind and tell your employer as a later date.

Think about the following (if it is relevant to talk about your epilepsy):

• Pick your moment carefully.  Some people with epilepsy have found it best to leave it to the end of the interview. This gives you time to impress the interviewer with your suitability for the job before raising the matter of your epilepsy.
• It may be useful to take along a doctors letter with which explains the nature of your epilepsy and how it may affect your employment.

What to tell your employer:

• The type of epilepsy you have and how it affects you. Include how often and when you have seizures
• Whether you have a warning or aura before having a seizure
• How long your seizures normally last
• What should be done if you have a seizure

Some employers know very little about epilepsy. For example they may assume - wrongly - that you cannot use a computer because of photosensitivity (abnormal sensitivity to flickering light). Its up to you to get the facts across in an accurate and matter of fact way.

Telling people you work with

Once you have found a job its up to you to decide what to tell your fellow employees. This can be tricky, but it is best to be honest. If other people know about your epilepsy and what to expect if you have a seizure there is less likelihood of embarrassment and anxiety all around.

Presenting the facts about your epilepsy in a positive way will help dispel any fear and misunderstanding on the part of your employer or fellow employees.

Epilepsy Later In life

Epilepsy can affect anyone at any time of life. It is more commonly diagnosed in people under the age of 20 or those aged over 60.

Most of the aspects of epilepsy discussed apply whatever age you are. If you have had epilepsy for a long time you will already be used to living with it. However, if you have been diagnosed later in life it can come as a complete shock, and it can be especially hard to make the necessary adjustments. For instance, having to give up driving can be a real blow, especially if public transport is poor where you live, or your partner depends on you being able to drive.

Why now ?

Epilepsy can strike us at any age, but some aspects of the ageing process can make us more prone to develop it in later life. Hardening and narrowing of the blood vessels in the brain (cerebrovascular disease) is a common cause as we get older. Strokes - interruption of the brain's blood supply or leakage of blood through the vessel walls - are another. Other medical problems may play a part too. Some of us are not as good as others at looking after ourselves as we get older and anemia and shortages of nutrients may also increase our tendency to develop seizures.

Simplifying Treatment

Most doctors today prefer to control epilepsy using just one drug rather than several. This makes life a good deal easier for those of us who are older, who may have more trouble remembering to take our medicine than when we were younger. And anti-epilepsy drugs have to be taken correctly if they are to control our seizures.

Taking several drugs increases the risk of side effects such as drowsiness. It can also be confusing if we have to take drugs for other medical problems. For this reason the doctor will try to keep your treatment as simple as possible.

Special Considerations

The principles of care are exactly the same when we are older as they are in younger people. However, there are various special factors we need to take into account with regard to epilepsy in later life.

Side effects can be more troublesome. Drugs often produce more effects as we get older because our bodies take longer to process them. Then again, because we are more frail, we may be more likely to sustain injury during a seizure. And because our bones tend to be more brittle we are more likely to suffer fractures if we fall or knock ourselves.

Seizures too may become more difficult to deal with. Elderly people sometimes feel confused for longer and fail to recognize where they are when they come round after a seizure.

If you care for an elderly person with epilepsy, keep an eye open for any deterioration in his or her mental state or alertness. Such changes may or may not be linked to epilepsy. It is a good idea to tell the doctor who may want to adjust the patient's medication.

Staying Independent

It's natural to want to stay independent for as long as we can as we get older. And an important part of such independence is being able to live in our own home. Sadly, the loss of those close to us means many of us are forced to live alone in later life. Most elderly people with epilepsy can manage to do so with a little extra support from those around them.

It can be particularly important to make adjustments to our living arrangements to make our homes safer as we get older.

There are various services in the UK to help older people. For example, the doctor may be able to arrange for a community nurse to visit. It may be possible to get some home help or meals on wheels, and there may also be day care centers which older people with epilepsy can visit. Further information on these types of services is available from your doctor, community nurse or local social services departments.

Miscellaneous Information

Evening Primrose Oil
(and Gamolenic Acid)

Many doctors advise caution in prescribing this treatment to people with a history of epilepsy. Anecdotal evidence from callers some people also indicates that taking Evening Primrose Oil (EPO) may make someone with a low epileptic threshold more likely to experience seizures.

The potential risks of taking EPO for people with a susceptibility to epileptic seizures were brought to light during studies on patients with schizophrenia in the 1980s. The patients did not have a diagnosis of epilepsy but when treated with EPO for general therapeutic reasons began experiencing seizures. It is not known whether this was an effect of the EPO alone or whether it was because the patients were also taking anti-schizophrenic drugs.

EPO may lower the seizure threshold and consequently increase the likelihood of seizures. EPO is absorbed by the brain and produces protaglandin (found naturally in the brain) which, in turn, can affect the seizure threshold. Prostaglandin is one of several hormone-like unsaturated fatty acids that act in exceedingly low concentrations on local target organs such as the autonomic and central nervous system.

Caution is advised in the use of Evening Primrose Oil in people with a predisposition to epileptic seizures.

Sudden Unexpected Death in Epilepsy

Receiving a diagnosis of epilepsy affects everyone differently but most people require some time to come to terms with the news and so may their families and friends. The information received at the time from the doctor and other sources may include basic medical facts and the practical aspects of living with the condition. Advice is likely to be generally positive suggesting a good prognosis (outcome) with the aid of anti-epileptic medication.

Around the time of diagnosis the person concerned and his/her family need to be told about the potential risks of having epilepsy, but this does not always happen. Most people with epilepsy live full and active lives. There is, however, an increased risk of death due to accidents, suicide and other medical conditions. There are also cases where the death appears to be directly related to epilepsy itself, usually referred to as Sudden Unexpected Death in Epilepsy (SUDEP). This information is not always passed from doctor to patient. This may be due to fear of speaking about a difficult subject or because the doctor is not fully aware of the risks. Perhaps the doctor feels their patient has enough to deal with and it is not the right time to mention anything negative associated with the condition. Whatever the reason few patients and their families are informed of the risk of death in epilepsy. Although some may prefer not to know and take every day as it comes, others would prefer to know but are not being given that chance.

Feedback shows that the relatives and friends of those who have died unexpectedly would also have preferred to have been told about SUDEP. To lose someone is hard. To discover that such important information has not been passed on can make the loss even harder to accept.

Epilepsy Action is promoting awareness of SUDEP to people with epilepsy and their families. We are campaigning to support further research and to increase understanding and knowledge about SUDEP amongst health professionals. The ultimate aim is to prevent people with epilepsy dying unnecessarily.

What is Sudden Unexpected Death in Epilepsy (SUDEP)?
"SUDEP is the sudden, unexpected, witnessed or unwitnessed, non-traumatic and non-drowning death in patients with epilepsy, with or without evidence for a seizure, and excluding documented status epilepticus, in which post-mortem examination does not reveal a toxicological or anatomic cause for death."1

How common is it?
Until relatively recently there was little known about this subject and it was believed to be rare. However, research now indicates that it is not that rare. There are fewer deaths from SUDEP than asthma but, taking into account that more people have asthma than epilepsy, epilepsy carries a relatively much higher risk.

Causes
Many studies on SUDEP have researched the changes to breathing and heartbeat. These appear to be the most likely causes but further research is needed. It is, for example, unclear whether there is already an existing weakness to the heart and lungs and, if so, how this may be related to epilepsy. One theory is that epilepsy itself, and/or the medication taken, may weaken some people's major organs.

The research on heart and respiratory function during seizures has identified the following as possible causes of SUDEP:

Sometimes people stop breathing during a tonic-clonic seizure. Usually the breathing returns as the seizure ends but it seems that in some cases this natural recovery may not happen.

During a seizure, part of the brain which controls the heartbeat may be affected. It is possible that this could cause an abnormal heart rhythm to develop and in some cases this could be unstable enough to cause the heart to stop beating.

Risk factors
There is still a great need for further research into SUDEP to ensure it becomes a rare occurrence. Research to date has not managed to identify the exact cause of SUDEP. What has come to light is that there are certain common factors that link many of the cases:

• Forgetting to take some dosages or not taking the medication at all
• Taking more than one type of anti-epileptic drug
• Having frequent changes of anti-epileptic drug dosage
• Poor seizure control
• Having seizures during sleep
• Being alone at the time of the seizure
• Experiencing tonic-clonic seizures
• Having brain damage
• Being a young adult, particularly male

When considering the risk factors remember that just because some or more of these may apply it does not mean that someone will die from SUDEP.

Prevention
Research into SUDEP has increased significantly over the last few years and pressure groups have lobbied strongly for this. Although this research has given us new information it is not clear enough to ensure that SUDEP can be prevented completely. Further studies are urgently needed. In the meantime we can use the information available to give us some ideas of ways of preventing SUDEP:

• People whose seizures are not well controlled would benefit from regular assessment by an epilepsy specialist in order to ensure optimum seizure control.
• If anti-epileptic drug treatment has proved unsuccessful treatments such as surgery or vagal nerve stimulation could be explored.
• There is now a range of newer anti-epileptic drugs available on prescription and it is also possible, at some epilepsy clinics, to participate in trials of new drugs that are not yet licensed.
• For those whose epilepsy is well controlled, it would be advisable to be monitored by a medical professional and to take the medication regularly as prescribed.
• Medication should never be abruptly withdrawn as this could cause seizures to occur. This may also increase the risk of death.
• If anyone has particular health concerns which they believe may put them more at risk, it would be advisable to discuss these with their doctor.
• There is evidence that the part of the brain which controls breathing can be stimulated to start working again if the person's body or limbs are moved. This needs to be no more than what happens in normal first aid for a seizure, when the person is placed in the recovery position.
• In many cases of SUDEP the person was alone. It would make sense, therefore, if possible, to stay with someone throughout a seizure and for 15 - 20 minutes or so afterwards to ensure breathing is normal. However this has to be balanced with issues such as the individual's wishes regarding independence and the practicalities of having a companion available whenever needed.

For anyone considering the possible risks of SUDEP, as in every other area of life, a balance has to be struck between living a full and active life and taking precautions to reduce risks. People with epilepsy are individuals and as such have the right to chose how they lead their lives.

The Mozart Effect

There has been controversy about the benefits ever since researchers claimed that listening to the K448 piano sonata improved spatial reasoning skills. Later research suggested that K448 can reduce the number of seizures in people with epilepsy.

Professor John Jenkins assesses international evidence on the effect of music on the brain, and calls for more work to be done to discover the key ingredient in the "Mozart Effect".

The original Mozart effect study in 1993 assessed volunteers spatial reasoning after listening to sonata K448, relaxation tapes or silence. Results suggested that just 10 minutes of Mozarts music improved their performance of tasks such as paper-cutting and folding. Later studies found that rats negotiated a maze faster after hearing K448 than rats who were played white noise, silence, or minimalist music. Elsewhere, children taught a keyboard instrument for six months, learning simple melodies (including Mozart), did better on spatial-temporal tests than children who spent the time working with computers.

Controversy arose when other researchers could not reproduce the positive results.

Scans have shown that the human brain uses a wide distribution of areas to listen to music. Rhythm and pitch tend to be processed in the left side, timbre and melody on the right. Those parts of the brain which we use for spatial/temporal tasks actually overlap with the music processing parts. Professor Jenkins suggests that listening to music would prime the activation of those areas of the brain which are concerned with spatial reasoning.

More recent work with epilepsy patients has indicated what Professor Jenkins calls a more impressive indication of a Mozart effect. Once again, sonata K448 was played to participants, most of whom showed a decrease in their epileptiform activity - the patterns in the brain that produce epileptic seizures.

Computer analysis of pieces by various composers showed that the music of Mozart and Bach shared a common factor, a high degree of long-term periodicity, in other words, wave forms repeated regularly, but not very close together, throughout the piece of music. By contrast, music which had no effect on either spatial reasoning or on epileptic seizures did not have this factor. Professor Jenkins commented:

"It is suggested that music with a high degree of long-term periodicity... would resonate within the brain to decrease seizure activity and to enhance spatial-temporal performance.

Professor Jenkins concludes that any health benefits of listening to music are not specific to Mozarts compositions, and calls for more research to be done on music other than K448, with longer listening times. For the benefits to be of real use, we need to discover exactly what musical criteria have to be present for the Mozart effect to take place.

Apart from another Mozart Concerto, K488, only one other piece of music has been found to have a similar effect, a song by the Greek-American singer Yanni.  Entitled 'Acroyali/Standing In Motion', it is featured on his album "Live At The Acropolis".  This composition was chosen by researchers because it was similar to Mozart's K448 in tempo, structure, melodic and harmonic consonance and predictability.

Epilepsy and Depression

Depression is a common experience for many people, but it is known to occur more often in those of us with epilepsy.

What is depression?

Most people feel sad from time to time. The difference between sadness and depression is not clear but, at some point, when sadness is prolonged and impairs a person's ability to enjoy life, that person may be considered to be depressed.

Depression can cause feelings of deep gloom and hopelessness. Other problems include difficulty in concentrating, in sleeping (either not being able to sleep or sleeping too much), decreased sexual desire and appetite disturbances such as overeating or loss of appetite.

Psychological/social factors

In people with epilepsy, depression can be a psychological reaction to having the condition or to being treated differently because of it. Symptoms of depression can also be triggered by the social problems related to a diagnosis of epilepsy (such as losing one's driving license) or to an increase in the number of seizures being experienced. And of course depression can be triggered in those of us with epilepsy by all the same things as for other people, such as the death of someone close, divorce or redundancy.

Drug related factors

Depression can also be a side effect of medication such as some barbiturates. The depression associated with barbiturates such as phenobarbital and primidone is often dose-related, which means that the higher the dose of the drug, the greater the risk of depression. Taking one or more other anti-epileptic drugs in combination with a barbiturate can also increase the risk of developing depression.

Factors related to the underlying cause of the epilepsy

Depression can also be related to the cause of the epilepsy. Injury to the brain can occur for many reasons, including stroke, oxygen deprivation, head trauma or a past infection such as meningitis or encephalitis. Because the brain controls our emotions and moods, it is not surprising that any disruption to normal brain functions can cause depression. Studies suggest that people with damage to the frontal and temporal lobes of the brain are more prone to depression than those with damage to other parts of the brain. However, many people with brain damage do not become depressed.

Seizures causing depression

Although it is unclear exactly how epilepsy as a condition can directly cause depression, it is known that some people have changes in mood or behavior in the period before a seizure occurs. This is known as the "prodromal" stage. Mood changes at this time are usually relieved by the seizure. Depression may occur as part of a warning or "aura" before a more recognizable seizure. Equally, depression and confusion are very common following a seizure. This is known as a "postictal" state. Usually, postictal states are brief.

Treatment options - benefits and risks

When deciding which treatment to use for depression, it is necessary to balance any benefits and risks to the person concerned. As the most serious complication of depression is suicide, this issue of risk versus benefit needs careful consideration. Apart from antidepressant drugs and counseling, in very severe cases, electroconvulsive therapy may be needed. Depression related to seizure activity needs treating by dealing with the seizures themselves, most usually with anti-epileptic medication.

Alternative/complementary therapies

As depression can be related to conditions other than epilepsy, it is important to seek medical advice before starting any treatment such as counseling, over-the-counter or herbal remedies. This is equally important even if the depression is related to epilepsy as some herbal treatments and remedies, such as St. John's Wort can interact with anti-epileptic medication.

Sleep and Epilepsy

Some people with epilepsy have their seizures only while awake, some while asleep and some have a mixture of both. The following information looks at different states of sleep and may be useful when considering why peoples seizures may occur at different times.

The sleep/waking cycle

There are three basic states of existence: wakefulness, non-rapid eye movement (also called quiet, orthodox or synchronized) and rapid eye movement (active, desynchronized, paradoxical sleep). Each part of the sleep-waking cycle is related to a particular type of epileptic phenomena.

The duration of non-rapid eye movement (NREM)/rapid-eye movement (REM) sleep cycle varies from 45 minutes in infancy to 90 - 110 minutes in adolescence, after which it is relatively stable. These cycles repeat throughout the night. In NREM there is little body movement and regular respiration, while REM is characterized by its ocular (eye) activity, frequent twitching of face and peripheral parts of the limbs, and increased and irregular respiration, therefore called active sleep. The two sleep states are based upon activation of different centers of the brain and different neurochemical mechanisms.

Generalized epileptic events (eg. tonic-clonic seizures) are increased in NREM sleep and decreased or abolished in REM sleep. Partial seizures may also be facilitated by sleep and sleep EEG recordings may show a second independent epileptic focus not present in waking recordings. This is because in REM sleep the generalized discharge may be suppressed, making the focal component evident.

Separate peaks of seizures occur about 1 - 2 hours after falling asleep and at 5 - 6 am. These can be understood as representing the most probable time of occurrence of the two most frequent seizure types i.e. generalized (eg tonic-clonic) and temporal lobe seizures of hippocampal origins respectively.

Particular forms of epilepsy are especially activated by sleep. For example, in Lennox Gastaut Syndrome in children, seizures are markedly increased in NREM sleep. These may occur 50 - 200 times per night but may be interpreted as simple body movements, when in fact they are seizures.

It is important to know which sleep state produces a persons seizures, as this would enable the correct treatment to be prescribed. However, increases in seizures in the second half of the night may be due to lowered serum levels of anti-epileptic drugs.

Nocturnal attacks of non-epileptic mechanism

Episodes involving sleep-walking, sleep terrors and urinary incontinence can be confused with epilepsy. Bed-wetting in people with epilepsy should be carefully investigated as, though it may be related to seizures, this should not be assumed. A sleep EEG could clarify whether epileptic activity is occurring.

Sleep deprivation

Sleep deprivation appears to be a precipitating factor for seizures in some people with epilepsy. The reason why this should be so is unclear. It may be due to neurochemical or hormonal changes or it is possible that the normal increase in protein synthesis that occurs in sleep may be impeded, thereby diminishing cellular repair mechanisms and rendering brain cells more open to epileptic activity. However, sleep deprivation may also be used by doctors to activate EEG abnormalities in patients when a diagnosis of epilepsy is unclear.

In conclusion, people whose seizures are triggered by changes in sleep patterns should be advised to maintain reasonably regular hours of retiring and awakening, to obtain sufficient sleep, and to avoid shift work or other causes of disrupted sleep-waking rhythms. There is not need to exceed average hours of sleep to reduce the chances of seizures occurring.

Sleep and Epilepsy

Some people with epilepsy have their seizures only while awake, some while asleep and some have a mixture of both. The following information looks at different states of sleep and may be useful when considering why peoples seizures may occur at different times.

The sleep/waking cycle

There are three basic states of existence: wakefulness, non-rapid eye movement (also called quiet, orthodox or synchronized) and rapid eye movement (active, desynchronized, paradoxical sleep). Each part of the sleep-waking cycle is related to a particular type of epileptic phenomena.

The duration of non-rapid eye movement (NREM)/rapid-eye movement (REM) sleep cycle varies from 45 minutes in infancy to 90 - 110 minutes in adolescence, after which it is relatively stable. These cycles repeat throughout the night. In NREM there is little body movement and regular respiration, while REM is characterized by its ocular (eye) activity, frequent twitching of face and peripheral parts of the limbs, and increased and irregular respiration, therefore called active sleep. The two sleep states are based upon activation of different centers of the brain and different neurochemical mechanisms.

Generalized epileptic events (eg. tonic-clonic seizures) are increased in NREM sleep and decreased or abolished in REM sleep. Partial seizures may also be facilitated by sleep and sleep EEG recordings may show a second independent epileptic focus not present in waking recordings. This is because in REM sleep the generalized discharge may be suppressed, making the focal component evident.

Separate peaks of seizures occur about 1 - 2 hours after falling asleep and at 5 - 6 am. These can be understood as representing the most probable time of occurrence of the two most frequent seizure types i.e. generalized (eg tonic-clonic) and temporal lobe seizures of hippocampal origins respectively.

Particular forms of epilepsy are especially activated by sleep. For example, in Lennox Gastaut Syndrome in children, seizures are markedly increased in NREM sleep. These may occur 50 - 200 times per night but may be interpreted as simple body movements, when in fact they are seizures.

It is important to know which sleep state produces a persons seizures, as this would enable the correct treatment to be prescribed. However, increases in seizures in the second half of the night may be due to lowered serum levels of anti-epileptic drugs.

Nocturnal attacks of non-epileptic mechanism

Episodes involving sleep-walking, sleep terrors and urinary incontinence can be confused with epilepsy. Bed-wetting in people with epilepsy should be carefully investigated as, though it may be related to seizures, this should not be assumed. A sleep EEG could clarify whether epileptic activity is occurring.

Sleep deprivation

Sleep deprivation appears to be a precipitating factor for seizures in some people with epilepsy. The reason why this should be so is unclear. It may be due to neurochemical or hormonal changes or it is possible that the normal increase in protein synthesis that occurs in sleep may be impeded, thereby diminishing cellular repair mechanisms and rendering brain cells more open to epileptic activity. However, sleep deprivation may also be used by doctors to activate EEG abnormalities in patients when a diagnosis of epilepsy is unclear.

In conclusion, people whose seizures are triggered by changes in sleep patterns should be advised to maintain reasonably regular hours of retiring and awakening, to obtain sufficient sleep, and to avoid shift work or other causes of disrupted sleep-waking rhythms. There is not need to exceed average hours of sleep to reduce the chances of seizures occurring.

Epilepsy and Memory

It is not uncommon for people with epilepsy to complain of a poor memory, and the reason for this may vary. Memory problems may, for example, be due to a person experiencing epileptic activity in the part of the brain responsible for memory. Someone who has damage in the part of the brain which registers and recalls information may also experience difficulties with memory.

A person who has frequent seizures, partial seizures for example, occurring several times a day, may find that she/he has difficulty concentrating or remembering things.

It is not unusual for someone who has had a tonic-clonic seizure to experience temporary amnesia immediately after the seizure; in certain individuals complete recovery from a seizure may take days or even weeks and they are unlikely to be able to fully remember the events surrounding the seizure.

One or two of the older anti-epileptic drugs, such as phenobarbitone, may in some people cause a slowing of the mental process and subsequent memory problems. This is more likely to happen if the drug(s) is taken in high dosages and/or over a long period of time.

In a person taking more modern anti-epileptic drugs, memory problems are extremely unlikely to occur as a direct side effect of the drug. it is possible, however, for drowsiness, lethargy and difficulties with concentration to be experienced if someone is taking too high a daily dosage of the drug(s). This may cause some people to experience difficulties in recollecting facts or events.

Some research suggests that people with epilepsy may have poorer memories than people in general because they have more to remember - hospital appointments, anti-epileptic medication, recording seizures etc.

It is also possible for mood to influence memory. For instance, if people are feeling anxious, stressed or depressed their memory is more likely to be unreliable.