What you should know
Causes of Childhood Epilepsy
Pinpointing the cause of epilepsy is difficult at any age. In seven out of every ten cases, there is no known cause. These children are then said to have idiopathic epilepsy. “Idiopathic” is a Latin word meaning “of unknown cause.”
There are many possible causes of epilepsy in children, including: problems with brain development before birth; lack of oxygen during or following birth; a head injury that leaves a scar in the brain; unusual structures in the brain; tumors; a prolonged seizure with fever, or the after-effects of severe brain infections such as meningitis or encephalitis.
When a cause can be identified, children will be described as having symptomatic epilepsy. The seizures are thought to be a symptom of the underlying brain injury.
Epilepsy is a common disorder. Frequently, more than one person within an extended family may have seizures.
In most cases, a clear pattern of inheritance of epilepsy within a family cannot be determined. However, there does seem to be a slightly increased risk among close relatives of people with seizures, compared to risk in the general population. It is therefore important to ask your relatives about a family history of seizures, and to share this information with your doctor.
Some disorders that may cause symptomatic epilepsy are genetically caused, and in some families there is a clear pattern of inheritance.
The Epilepsy Foundation is helping the search for genes through its Internet-based Gene Discovery Project. The project invites families with a history of seizures in various members to post their family trees (called pedigrees) on the project site for future review by genetics researchers.
Seizures, Fevers, and Other Conditions
Febrile (fever-caused) seizures affect many children between the ages of 3 months and 6 years. Febrile seizures are not the same as epilepsy, although in rare cases they may be the first seizures experienced by a child who develops epilepsy later on.
Febrile seizures occur when a child’s temperature rises rapidly, usually to 102 degrees or higher. There is often a family history of febrile seizures; they are most common around 18 months of age and affect between 3 and 4 percent of all children. Thirty to 40 percent of children who have a febrile seizure will have another one, but most children grow out of the tendency as they grow older. About 3 percent of children with febrile seizures go on to develop epilepsy.
In children with epilepsy, fever (as well as some drugs, medications and sleep deprivation) may trigger seizures.
Having a seizure is a sign of an underlying condition in the brain. In many cases it is the only sign of a brain disorder. In other cases it may be just one of many symptoms.
Common brain conditions that may also be associated with seizures include tuberous sclerosis, cerebral palsy, mental retardation, autism and neurofibromatosis.
Epilepsy associated with other brain disorders is usually treated in the same way as epilepsy from an unknown cause.
-Protect the child from injury while the seizure continues, but don’t forcefully restrain movements.
-Whenever possible, try to lay the child on a soft surface and turn on one side.
-Place something flat and soft under the head; loosen tight neckware.
-Do not place anything in the mouth.
-CPR should not be given during a seizure.
-Record approximately how long the seizure lasts.
-As the jerking slows down, make sure breathing is unobstructed and returning to normal.
-Do not try to give medicine or fluids until the child is fully awake and aware.
-Reassure the child and gently help to re-orient him or her as consciousness returns.
What to Tell Your Doctor
Most doctors will never see your child have a seizure — they don’t happen often in the doctor’s office. It will help the doctor if you write down what the child was doing just before the seizure began, what happened during the seizure, how long it lasted, and how quickly your child recovered afterwards.
Unless your doctor tells you otherwise, a seizure in a child with epilepsy that ends after a couple of minutes does not usually require a trip to the emergency room.
However, if it lasts more than 5 minutes without any sign of slowing down, is unusual in some way, or if a child has trouble breathing afterwards, appears to be injured or in pain, or recovery is different from usual, call 911 for emergency help.
It is always a good idea to discuss with your doctor in advance what to do if your child should have a prolonged seizure.
For some children who have convulsive seizures that are prolonged — lasting several minutes — or occur in clusters, there are new treatments available that parents or caregivers can administer orally, rectally, or by injection to bring this type of seizure to an end. Ask your doctor whether these treatments would be appropriate for your child.
Managing Status Epilepticus
Prolonged or clustered seizures sometimes develop into non-stop seizures, a condition called status epilepticus.
Status epilepticus is a medical emergency. It requires hospital treatment to bring the seizures under control. If your child has had episodes of non-stop seizures that had to be treated in the emergency room, you will want to have a plan of action ready in case they occur again.
Ask the doctor if there are any new treatments for use at home or at school to stop a seizure from developing into status.
If your child is experiencing continuous seizures, call an ambulance. Do not attempt to transport an actively seizing child in your car unless an ambulance is not available.
Be aware of where the nearest hospital is, how long it takes to get there. If you live a long way from the hospital, you may plan to call earlier than you would if it were closer.
If there are several hospitals nearby, ask your doctor in advance which one to call.
Consider arranging for standing orders prepared by the doctor to be kept in the emergency room so the seizure can be managed as your doctor directs. Ask for a copy for yourself if you and your child travel out of town.
Leave detailed written instructions with babysitters or adult caregivers. If you have been instructed in the use of in-home therapy, make sure that a responsible caregiver also receives instruction.
Fortunately, most seizures, even those that are prolonged, end without injury. The important thing is to work with your doctor so that you have a plan to follow when they occur.
Managing Partial Seizures
A child who has partial seizures that affect his emotions or sense of the world around him may be intensely frightened by the episodes.
Children with this type of epilepsy need lots of reassurance — and an adult who keeps track of how often the seizures occur. If they become prolonged and frequent, emergency treatment may be necessary.
Managing complex partial seizures requires gentle monitoring during the seizure, keeping hazards out of the way, reassuring the child in a calm voice, and keeping track of how long the seizure lasts.
Prolonged confusion and clusters of complex partial seizures may also require at-home therapy as prescribed, or emergency treatment.
Treatment with Medicines
Childhood epilepsy is usually treated with seizure-preventing medicines called antiepileptic or anticonvulsant drugs.
If the drugs don’t work or if the child has a lot of side effects, surgery, the ketogenic diet, or vagus nerve stimulation (VNS) may be tried.
If medicines do not control a child’s seizures, he or she may be a candidate for surgery. The most common form of epilepsy surgery removes a fairly small area of the brain where seizures begin. Sometimes, larger areas are removed.
Other surgery, performed less often, blocks nerve pathways in the brain to stop the spread of seizures from one part of the brain to another.
If medications fail to control a child’s seizures, your doctor may recommend a special high fat, low carbohydrate, restricted calorie diet. It is called a ketogenic diet. Calories are strictly limited, and parents have to be very careful not to allow the child to eat anything — even cookie crumbs or toothpaste — that isn’t on the diet or hasn’t been pre-measured and pre-weighed within the formula.
The diet requires a team effort — the family, the physician, the dietitian, the nurse education team, and, if the child is old enough, the child himself — all working together to make sure the diet is followed and any side effects are monitored.
WARNING: The ketogenic diet is serious medicine. It is not a do-it-yourself diet. It could have serious effects if not monitored by a physician and dietitian.
Vegus Nerve Stimulation (VNS)
Vagus nerve stimulation is a new type of treatment that may be tried when seizures cannot be controlled by other methods.
The treatment works by sending regular small bursts of electrical energy to the vagus nerve, a large nerve in the neck that leads directly into the brain. The energy comes from a small, disk-like generator, about the size of a stop watch, that is surgically implanted under the skin on the chest wall.
The generator is connected to lead wires under the skin, the ends of which are wound around the vagus nerve. The operation which places the device can be done on an inpatient or outpatient basis.
Specialized care for children with hard-to-treat epilepsy is available at special centers around the country. They offer in-depth evaluation, surgery, the ketogenic diet, and VNS therapy.
Children take the same antiepileptic meds as adults do. Medication may be prescribed as tablets, sprinkles, capsules or in syrup.
These drugs are designed to prevent seizures. Some are successful with a limited number of seizure types; others have a broader range of action. Whenever possible, doctors try to control seizures with one drug. Some children, however, may have to take more than one.
Children may respond so well to medication that no further seizures occur so long as the medication is taken regularly and an effective level is maintained in the child’s blood.
Not having seizures does not mean that the medication is no longer needed. Most children require a minimum of several years of therapy. Always ask the doctor before stopping antiepileptic medication.
Giving a child only part of the medication, or stopping it abruptly can cause a serious increase in seizure activity.
Finding the right drug
The search for the best medication for any individual child may take quite a long time Children, like adults, respond to medications in different ways. Several drugs or different combinations of drugs may have to be tried in an effort to get the seizures under control. The goal of treatment is to achieve the greatest level of control, the lowest level of side effects, at the lowest possible dose.
Common side effects from antiepileptic drugs include fatigue, nausea, changes in vision, and weight gain.
Some side effects are linked to high dosages. Others are due to individual sensitivity or allergic reaction. Some tend to happen when a new medication is started, but go away (or become less of a problem) as the child becomes accustomed to it.
Helping the treatment work
-Ask your doctor about possible side effects associated with the medicine and what you should do if you see them.
-Keep follow-up appointments. Some medications require periodic blood tests that are important to your child’s health. Ask the doctor at the end of each visit when he or she wants to see you both again, and make the next appointment then.
-Don’t change the dose or discontinue seizure medicine on your own without checking with your child’s doctor.
-Ask for refills from your pharmacy several days before the medication is due to run out.
-Ask your doctor whether any over-the counter medicines may interfere with the epilepsy drug your child is taking. Check with the pharmacist when buying other medicines.
-Ask your doctor how to handle fever associated with childhood illness. Ask, too, about the best way to give medication when a child has a stomach virus and cannot keep medication down.
Find out what you should do if your child misses a dose of medication.
Parents often worry that long term use of antiepileptic drugs may lead to drug abuse or dependency in their children.
Most doctors say there is very little if any abuse of these medications among young people with epilepsy. In fact, refusing to take the medication is a more common form of rebellion among teenagers.
Child at home
It may be helpful to talk with your other children about epilepsy, and encourage them to ask you questions about it. Children often have misconceptions and may even blame themselves in some way about what has happened to a brother or sister. They may be afraid they will start to have seizures, too.
Siblings may also feel abandoned and lonely because the parents have been so focused on the problems of the child with epilepsy. Parents may have had to spend long hours at the hospital while the other children waited at home.
Setting aside some special time for the other children in the family, and making time to answer their questions fully should help.
Ignoring behavior you don’t like (so long as no one is likely to get hurt by it) and rewarding good behavior is as likely to work for children with epilepsy as it is for other children.
However, parents often worry that discipline or emotional upset because of a wish that is not being granted will cause a seizure. They may be tempted to give in to unreasonable demands from a child with epilepsy because of that natural concern.
If this is something that happens in your family, ask your doctor about the level of risk for your child and how you can exert discipline in a way that is safe and reasonable.
Informed, understanding relatives are a wonderful source of strength when a child has epilepsy.
Others may have beliefs about this condition that hail from an earlier time. They may think it is somehow linked to mental illness (it isn’t), or someone’s fault (wrong), or is related to mental retardation (usually not), or is even a sign of spiritual possession (an old myth that still lingers).
Helping other family members understand the true nature of epilepsy as a medical condition affecting brain function will set these fears at rest. Your commitment to helping your child live as normally and actively as his or her condition permits, and to treat your child as much as possible just like any other child, will guide their response as well.
One of the biggest challenges for parents when a child has seizures is to help the child maintain self esteem.
Studies comparing children with epilepsy with children who have other chronic health conditions, such as asthma or diabetes, show that having seizures has a more negative effect on how children feel about themselves.
The way parents feel about the epilepsy also affects how the child feels. Families that are open and accepting, and that help the child build on strengths, can make a positive difference in the child’s life.
How Parents Can Help
-Emphasize the positive; praise success.
-Build on things the child likes and can do.
-Avoid describing the child’s seizures or the financial burden of medical care as problems in front of the child.
-Encourage a special hobby or lessons to acquire a special skill. Discuss seizures and epilepsy openly with the child and answer his or her questions about it.
-Encourage the child to be active and to have as much social contact with other children as possible.
-Try not to make your child’s seizures a reason not to do things the family would otherwise do.
-Take some time for yourself without feeling guilty about it.
Your Child at School
Having seizures at school can be socially damaging to a child and frightening to others. However, it doesn’t have to be.
A well-informed, confident teacher and a supportive school nurse and school administration can make all the difference in the world.
There are several steps parents can take to create a more accepting school environment for a child.
First, take time to meet with your child’s teacher before the beginning of each school year to discuss how epilepsy affects your child, what type of seizures he or she has, and how you would like the teacher to handle the seizures when they occur.
Since seizures are a common problem, many teachers will have had other students with epilepsy. If your child’s teacher is unfamiliar with seizures and would like information about them, contact your local Epilepsy Foundation. Videos, pamphlets and first aid presentations available from the Epilepsy Foundation have a basic message: that students with seizures belong in school and are in no way any kind of threat to other children.
With information, reassurance, and plenty of opportunities to ask questions, other children can also learn to take seizures in stride and continue to accept the child who has them. But gaining acceptance is not the only challenge for children with seizures.
While many children with epilepsy test within the same range as other children, and are quite normal and healthy, their achievement at school may be lower.
There may be several reasons for this, including side effects from the medication, days spent out of school for tests or doctor visits, and anxiety about having seizures at school. Memory or attention may also be affected.
After a seizure a child may be unable to remember anything that happened the previous day or immediately afterwards. Testing for learning disabilities may reveal specific difficulties related to where the seizures are occurring in the child’s brain.
Some children with epilepsy will need specialized planning, with goals and objectives carefully spelled out, developed in partnership between the parent and the school.
School activities should be open to all children, including children with seizures.
Various federal laws (Section 504 of the Rehabilitation Act of 1973, the Individuals with Disabilities Education Act and the Americans with Disabilities Act) and state laws protect children with disabilities from discrimination on the basis of disability.
Dealing With Risk
A seizure that ends normally after a minute or two is usually not hazardous to a child who has epilepsy.
However, risks increase when the seizure happens near water, at heights, near traffic, or in any setting in which sudden loss of awareness could be dangerous.
Parents naturally want to protect a child who has this extra level of risk on top of all the other risks that accompany a normal childhood. However, excessive concern about risk may isolate children with epilepsy from others and reduce social interaction. The following information may help you strike a balance.
Water can be a hazard to children with seizures, whether it is in a swimming pool, at the beach, or in the bathtub.
-Supervise young children closely during tub baths.
-Have older children take showers, not tub baths.
-Set water temperature low so a child won’t be scalded if consciousness is lost while hot water is running.
-Hang bathroom doors so they open outwards, and remove locks.
-Make sure shower and bath drains run quickly and are unobstructed.
A child with epilepsy — or any child — should never swim alone, or be on a boat or close to water (including backyard wading pools) without a flotation device or life jacket.
-Carefully supervise children near water.
-Make sure an adult is present who knows your child has epilepsy and is a good enough swimmer to help if your child has a seizure in the water.
-Tell lifeguards or swimming instructors at local pools or beaches that your child has seizures.
If a child has a seizure in water, he or she should be checked by a lifeguard or parent. If there is any possibility that water has been swallowed or breathed into the lungs, get a medical check up
Unless your child’s doctor recommends otherwise, sports activities and other exercise are as beneficial to a child with epilepsy as they are to any other child.
In general, school sports activities and gym should be open to all children, including children with seizures. Safety measures such as harnesses, shock absorbing mats and adult supervision should reduce risks.
Coaches and other officials should be aware that a child has seizures, and how the parents want them to be managed.
Wearing safety helmets when riding a bicycle, or for sports where head injury is possible, should reduce risk.
What You Should Know
In many ways, epilepsy is a different condition in a woman than in a man. The differences arise because of biological differences between women and men, but also because of the different social roles they play. As a result of these biological and social differences, women with epilepsy face special challenges, especially in the area of reproductive health.