Epilepsy - a parent's 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.

What causes epilepsy?

In many cases, the cause of epilepsy is unknown. In others, the epilepsy may be linked to an illness such as meningitis, a malformation of the brain, problems with a child's metabolism or damage to their brain. This damage can be caused by such things as a severe head injury or a difficult birth.

Why has my child developed epilepsy?

Most parents seek to find a reason for their child's epilepsy. They wonder if it could be their fault, or whether it has been passed down through the family. The inheritance of epilepsy is a complicated issue. Even where a genetic link has been discovered for a particular type of epilepsy (such as Juvenile Myoclonic Epilepsy) there is often no other family member with the condition. Your doctor may be able to shed more light on why your child has developed epilepsy but it is worth remembering that for many, many chidlren, it is just 'one of those things'.

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 generalised 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 tonsilitis and teething. Fortunately, most children grow out of them by the time they start school. See also: Febrile seizures

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 they pass out. This causes the child to stop holding their 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 they develop 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 sometimes use the term 'epilepsy plus'.

If your child is severely affected by epilepsy then Epilepsy Action can help with the information and advice you will need to enable you to get the best for him and to meet the special challenges facing you. You can use the Email Helpline or if you live in the UK, by phoning the Freephone Helpline on 0808 800 5050.

See also:

• Benign Rolandic epilepsy
• Juvenile Myoclonic epilepsy
• Aicardi syndrome
• Landau Kleffner syndrome
• Lennox-Gastaut syndrome
• Otahara syndrome
• Ramsay Hunt syndrome
• Rasmussen syndrome
• Rett syndrome
• Sturge-Weber syndrome

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 behavioural checks to assess their overall progress. If you have been issued with a Parent Held Health Record take it with you when you visit the doctor as it may contain some clues as to the nature of your child's epilepsy.

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 counsellor at the surgery or a special epilepsy liaison nurse at the hospital clinic. Epilepsy Action can also provide much information on epilepsy, its day-to-day management and local support groups. 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 they 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 they have been free from seizures for at least two years, and in certain cases they may need to continue taking anti-epileptic drugs indefinitely. Usually your child will move from the paediatrician (children's specialist) to adult care at around 16 years of age, but this may vary.

See also:

• Medication chart
• Medical management

Other options

Other options which are sometimes considered are brain surgery and a special high-fat diet, particularly for difficult to treat epilepsy. In some cases an implant called a vagal nerve stimulator can help if medication has failed to control seizures.

• Surgery
• Ketogenic diet
• VNS (Vagal Nerve Stimulation)

Will my child grow out of their epilepsy?

This is usually impossible to answer. Some epilepsies occur in childhood and of these about a third disappear at adulthood. Other epilepsies continue throughout life. Your doctor may be able to give you information on the likely outlook for your own child.

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 their needs. Try not to be overprotective or concentrate all your attention on the child with epilepsy.

Other people

You may fear that friends, neighbours 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 understand epilepsy. We believe 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 & behaviour

It is rare for behavioural problems to be a direct result of epilepsy and it is a myth that there is an 'epileptic personality'. It is important to remember that simply because a child has epilepsy it does not follow that every other problem is also related to their epilepsy. Sometimes social issues could affect your childs behaviour such as stress, emotional upset, and boredom. Behavioural problems and learning difficulties could also be caused by the severity or type of their seizures, any damage to their brain, and certain anti-epileptic medication. More information about epilepsy and behaviour

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 the other children do not understand epilepsy and/or the child with epilepsy doesn't feel able to assert themselves. Signs can include temper tantrums, violence, or sudden misbehaviour like playing truant, or nervousness. Talk to your child's teacher if you are worried and make sure your child knows they have your support and encouragement to stand up for themselves.

Helping your child live with epilepsy

Accurate information combined with a positive outlook will help you and your child to enjoy their childhood. Tell them as much as you think they can understand about epilepsy and start showing them simple ways to manage the condition. You or your child may wish to visit our children's section.

As your child grows older you can encourage them to take increasing responsibility for themselves. Our website has a section about issues relevant to teenagers.

Will my child be entitled to any benefits?

If your child's epilepsy is so severe that they need a lot more care and supervision than another child of a similar age, they may be eligible for a disability payment. Further information is available from the Benefits Agency. Contact the Epilepsy Action Freephone Helpline or the Benefits Enquiry Line (BEL) 0800 882 200.

Education

Playgroup/Nursery education

Young children will benefit from going to mother and toddler group and, later, playgroup or nursery, but make sure the staff and any volunteer helpers know they have epilepsy and what to do if they have a seizure.

Education - 3 to 16

Most children and young people with epilepsy attend ordinary schools, colleges and universities. School is a central part of your child's life and they 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 they don't have to be sent home every time they have 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.

See also: Epilepsy and Education

Epilepsy & learning

Most children with epilepsy are just as capable of learning as other children, and many are high achievers. Unfortunately some children have difficulties with their learning abilities in school and if you suspect that your child is not progressing as well as they should be, have a word with their teacher and their doctor. Their problem may not be related to their epilepsy, but on some occasions it might be. Epilepsy and learning difficulties

Learning difficulty

If a child with epilepsy has 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) they may need special help to reach their 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 they have 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 they aren't getting all the help they need at school they may have special educational needs. To find out, in the UK, you can ask your local educational authority (LEA) to carry out a statutory assessment. 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. The results of this are often included in a Statement of Special Educational Needs - usually known simply as a 'statement'. Epilepsy Action can give further advice to UK residents - ring the Freephone Helpline on 0808 800 5050.

Should my child go to a special school?

By UK law you have a right to choose a school that is suitable for your child's age, ability and special needs. 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 their needs can be met more easily. Your UK local education authority will supply you with a list of special schools in your area. As well as these there are a very small number of schools providing solely for children with epilepsy. Your local education authority may — very occasionally — be able to fund your child to attend one of these.

See also:

• Sports and leisure
• Safety

Local services

In the UK, your local authority must provide a range of services for children 'in need' to enable them to live as normal a life as possible. These include medical care, advice, information and counselling, day care, after school and holiday provision, help with transport and holidays, cultural, social and leisure activities, short-term or respite care and many more, though it's not always easy to find out what is available. Your doctor, health visitor, local social services department or Epilepsy Action can help.

See also: Epilepsy and Education

Children and Mobile Phones

Mobile phones are now part of many young people's daily lives. There is still a lot of controversy over the safety of mobile phones, so therefore may be a worry to many parents of children with epilepsy. Epilepsy Action sought advice from one of our medical advisors on this subject. Epilepsy and mobile phones

Adolescence to adulthood

Some adolescents may 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 their medication the better able they will be to make responsible decisions.

With support your teenager can learn that epilepsy doesn't have to rule their life. Provided they are sensible, there's no reason why young people with epilepsy shouldn't take part in sports, travelling, 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 may make it especially hard when they can't be like their friends because of problems linked to epilepsy. For instance, they will only be able to learn to drive if they have 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 their own epilepsy and to recognise that epilepsy doesn't have to rule their life.

Preparing for adulthood

Use the following checklist to make sure your teenager has all the information they needs:

• Do they know what services can help and how to find them?
• Do they understand why they need medication and what to do if their seizures get out of control?
• Do they have responsibility for their own tablets? They need to carry a spare supply in case they doesn't get home.
• Do they know how to organise their own medical care?

See Young people's guide to epilepsy, which covers issues such as alcohol, hormones, contraception, education and careers.

Education - 16 plus

See also: Epilepsy and Education 

Later on your child will need to decide whether to go on to further or higher education. It's a good idea to encourage them 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. They will need to decide who to tell about their epilepsy and what to tell them. Epilepsy Action believes that honesty is the best policy. Being open avoids embarrassment and will enable them to get any help they need 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 themselves where they stand on matters such as alcohol, street drugs and how they conduct their social life. In making such choices, they will, of course, need to take into account how these are likely to affect their epilepsy.

If they encounter particular problems linked to epilepsy, they can discuss them with a personal tutor or student counsellor. And, of course, Epilepsy Action is always on hand to provide information on all aspects of epilepsy.

See also:

• Epilepsy and employment
• Epilepsy and leisure
• Epilepsy and Education
• Children and education-related links