Epilepsy in children: Everyday life

The first few seizures a child has are often quite worrying for everyone involved – especially if the seizures make their whole body jerk and shake. These types of seizures are much less common in children, though. Most parents and teachers don't know how to deal with seizures at first and are worried about the child. But many parents gain more confidence in handling epileptic seizures over time.

The main advice is:

• Stay calm.
• Watch the time to see how long the seizure lasts.
• Protect the child from injury.
• Don’t try to stop their movements or put anything in their mouth.
• Don't leave them on their own, and also stay with them once the seizure is over.
• If necessary, get help and call the emergency services (112 in Germany and many other countries, 911 in the U.S.).

Most seizures stop within a few minutes and aren't dangerous.

It is a good idea for the child to carry a medical ID card on them, to let people know that they have epilepsy and who to contact in an emergency. It should also provide information about their current medication and doctor.

The first few times a seizure occurs, it's important to observe the child as closely as possible so you can tell the doctor exactly what happened. That will help him or her to determine what type of epilepsy it’s likely to be and then suggest a suitable treatment.

The way in which epilepsy limits what a child or teenager can do will vary greatly from person to person. But they normally don’t have to miss out on much. Generally speaking, children and teenagers with epilepsy should be allowed to do as much as possible. The only exception is if there’s a great risk of injury. Being overly careful can lead to low self esteem and affect their development. It is a good idea to talk to the doctor about which activities are suitable and which are not.

Most types of sports aren't a problem if the child or teenager is otherwise healthy. Some sports – such as swimming or climbing – are less suitable though due to the risk of danger if a seizure occurs while doing them. When swimming, children should be watched closely and wear swimming aids if necessary. They should also never be left alone in a bath, and preferably take showers instead. Scuba diving is only possible if the person hasn’t had any seizures for several years.

If a child regularly has seizures, it’s important to protect their head from injury when they’re doing sports – for instance with a helmet. But sports activities generally don’t trigger epileptic seizures themselves.

You can read in-depth information about sports and epilepsy on the Epilepsy Society's website.

It is important that teachers are told about the child’s epilepsy and also know what to do if they have a seizure. The more they know about it, the more relaxed they can be with the child. This is also true for the less obvious forms of epilepsy (absences), which can be mistaken for things like daydreaming.

Epilepsy medication or regularly having seizures can affect your performance and ability to concentrate, and make you feel tired or nervous. Some children also have problems interacting with other children or their teachers. To make sure the child isn't excluded, it’s important that he or she gets good support at school.

Most children who have epilepsy can go to a normal kindergarten and school. They do not need special education either. Some children are more affected by their epilepsy and need support, for instance with learning. As well as the possibility of one-to-one support in mainstream schools, there are special schools for children with certain needs.

It is a good idea to leave a copy of a written agreement in the school or kindergarten, covering things like how to deal with a seizure, whether the child needs to take medication while they are there, and whether certain things need to be done or avoided.

That depends on the situation. If the treatment is so effective that the child is very unlikely to have a seizure at school, then there's no need for other children to know that he or she has epilepsy. If the child is ashamed and worried about being teased, it might be better for them to keep it to themselves or only tell their close friends about it. Then they can decide later whether they want to let anyone else know.

But if the child often has seizures, it’s best to tell other children about the epilepsy. They should then also learn how to help during a seizure – for instance, by fetching a cushion or removing objects that could injure the child.

There are only a few types of work that people who have epilepsy aren't allowed to do. These include flying planes and driving buses or trains. Generally speaking, they should avoid jobs that could put them or others at risk if they have a seizure.

If someone hasn’t had any seizures for a long time, most careers are open to them. Some careers might only be possible if they take medication regularly.

If people only have seizures in their sleep, they will be able to do most jobs, too. This is also true for those who have such mild seizures that their ability to do the work isn't affected. For instance, twitching in the face or an arm usually isn't a problem, unlike seizures that make you lose consciousness or fall.

It is important to start thinking about possible future careers in good time before leaving school. It can help to talk to the doctor or get advice from an epilepsy information center. You can also contact the Federal Employment Agency for further information. They can tell you about the various types of available support too.

Many people who have epilepsy go to university. They can also make use of various forms of support. For instance, in Germany, people who have a chronic illness or disability can submit a “hardship application” (Härtefallantrag) to make it easier for them to get a place on a degree course. You can also get help while studying, such as compensation for being disadvantaged (Nachteilsausgleiche). You will find information about that on the website of the German National Association for Student Affairs (DSW).

This is only necessary if certain tasks can't be done due to the illness. If that isn't the case, the employer doesn’t legally have to be informed that someone has epilepsy. You could talk to your company's in-house medical service instead, if they have one. Any information you share with them must be treated with confidentiality and can't be passed on to your employer.

People are generally advised not to mention their epilepsy when sending a job application. It is better to talk about it in person if you're invited for an interview. If you're not sure, you can get advice before applying for a job – for instance, by contacting an epilepsy center or a career counselor. It can also help to share experiences with other people in a support group.

A doctor will have to assess whether someone who has epilepsy can get a driver's license. It will only be possible if they haven't had any seizures for a long time and aren’t expected to have any seizures while driving. The required length of seizure-free time will depend on the type of epilepsy and how it has developed over time. Being seizure-free for one year is often enough. But you might have to wait two years or more.

As well as having good medical treatment, support at school and at home are important too. Some children who have epilepsy need special help, for instance at school. Advice and practical support can help to lighten the load for parents.

In Germany, support is available from:

• Early intervention centers (Frühförderstellen): These provide families with medical and psychological support, as well as tips about raising children and coping in everyday life. For instance, they offer various types of therapy or arrange for help in everyday family life and at school.
• Social-pediatric centers (Sozialpädiatrische Zentren, SPZ): Medical professionals and therapists work together in these centers to support children who have problems like chronic illnesses, behavioral issues and developmental disorders.
• Support groups: Here you can share experiences with other people in similar situations. Support groups also provide information about coping with the disease and help you to find practical support.
• Epilepsy information centers (Epilepsie-Beratungsstellen): These centers offer advice, information and support for people who have epilepsy, as well as their families.
• Home care nurses: Depending on the level of help needed, it may be possible to receive nursing care at home – either temporarily or over the long term. You have to submit an application to the long-term care insurer (Pflegekasse) for this.
• Family support services (Familienentlastende Dienste, FED): These take care of and accompany children who are ill or have a disability in everyday life. This helps to relieve some of the burden on their parents and siblings.

Children whose lives are greatly affected by their medical condition can apply for integration assistance (Integrationshilfe). Here a specially trained professional accompanies and helps the child in day care or at school. He or she helps the child to settle in and is there for them. Applications for integration assistance have to be submitted to the social welfare office (Sozialamt). If a child has a lot of epileptic seizures, he or she can be accompanied by a medically trained professional. The costs of this service are covered by statutory health insurers. If a child has learning difficulties, their parents can apply for learning therapy, for instance.

If a child has severe epilepsy, it may be possible to apply for official recognition as a severely disabled person. This allows them to receive extra support.