Epilepsy

If you have a child with epilepsy, you’re not alone — 3 million Americans have this disorder.

Anyone can get epilepsy at any age, but most new diagnoses are in kids. Some kids with epilepsy outgrow their seizures by the time they’re teens.

About Epilepsy

Epilepsy is a disease of the central nervous system in which electrical signals of the brain misfire. These disruptions cause temporary communication problems between nerve cells, leading to seizures. A seizure can be thought of as an “electrical storm” that causes the brain to do things that the person having the seizure doesn’t intend.

Having a single or sometimes even several seizures is not necessarily considered epilepsy. Kids with epilepsy are prone to having multiple seizures over a fairly long period of time (months to years).

Epilepsy:

• isn’t the only cause of childhood seizures
• isn’t a mental illness
• doesn’t necessarily affect intelligence
• isn’t contagious
• doesn’t typically worsen over time

Causes of Epilepsy

Some people have a specific problem in the brain that causes the seizures. These include:

• infectious illness (such as meningitis or encephalitis)
• brain malformation during pregnancy
• trauma to the brain (including lack of oxygen) due to an accident before, during, or after birth or later in childhood
• metabolic disorders (chemical imbalances in the brain)
• brain tumors
• blood vessel malformation
• strokes
• chromosome disorders

In kids, more than half of epilepsy cases are idiopathic (meaning there’s no other clear cause or visible problem in the brain). Often, there’s a family history of epilepsy (kids with a parent or other close family member with epilepsy are more likely to have it, too). Researchers are studying the genes responsible for these forms of epilepsy.

Understanding Seizures

It can be difficult to tell if a person is having a seizure. Seizures vary in severity, frequency, duration (from a few seconds to several minutes), and in their appearance. It’s important to know the type of seizure a person is having because it may affect day-to-day activities (like driving) and the types of treatments available.

The two main types of seizures are generalized seizures, which affect the whole brain all at once, and partial seizures, in which only part of the brain is involved. Some people with epilepsy have both kinds. Also, the electrical problem in a partial seizure can spread to cause a generalized seizure.

Partial seizures can be either simple (no loss of consciousness) or complex (the person loses consciousness). There may be twitching of a finger or several fingers, a hand or arm, or a leg or foot. Certain facial muscles might twitch. Speech might become slurred, unclear, or unusual during the seizure. The person’s vision might be affected temporarily. He or she might feel tingling throughout one side of the body. It all depends on where in the brain the abnormal electrical activity is taking place.

Generalized seizures involve electrical disturbances that happen all over the brain at the same time. These include several types of seizures, including absence seizures (also called petit mal), tonic-clonic seizures (also called grand mal), and myoclonic epilepsies.

Absence seizures are more common in girls than in boys. In this type of seizure, the person may appear to be daydreaming or may stare off into space. After the seizure, which may last about 15 seconds or less, the person returns to a normal activity level.

During a tonic-clonic seizure, a person’s eyes may roll back, the muscles may stiffen, and the person might make sudden jerking motions, such as flinging the arms outward. He or she may suddenly go limp and slump down or fall over. The person could also lose control of the bowel or bladder.

Other types of seizures include myoclonic seizures and infantile spasms. Talk to your doctor to learn more or visit the Epilepsy Foundation website.

During a Seizure

During a seizure, it’s very important to stay calm and keep your child safe. Be sure to:

• Lay your child down away from furniture, stairs, radiators, or other hard or sharp objects.
• Put something soft under his or her head.
• Turn your child on his or her right side so fluid in the mouth can come out.
• Never stick anything in your child’s mouth or try to restrain him or her.

Do your best to note how often the seizures take place, what happens during them, and how long they last and report this to your doctor. Once a seizure is over, watch your child for signs of confusion or the postictal phase. He or she may want to sleep and you should allow that. Do not give extra medicine unless the doctor has prescribed it.

Kids who have partial seizures may be frightened or confused during or after the seizure. Offer plenty of comfort and reassure your child that you’re there and everything is OK.

Most seizures are not life-threatening, but if one lasts longer than 5 minutes or your child seems to have trouble breathing afterward, call 911 for immediate medical attention.

Diagnosis

Talk to your doctor if your child has seizures, staring spells, confusion spells, shaking spells, or unexplained change in behavior or school performance. The doctor can refer you to a pediatric neurologist, who will take a patient medical history and examine your child, looking for findings that suggest problems with the brain or the neurological system.

If the doctor suspects epilepsy, tests will be ordered, which may include:

• an electroencephalogram (EEG), which measures electrical activity of the brain via harmless sensors secured to the scalp while the child lays on a bed. Usually the doctor will ask that a child be sleep-deprived (put to bed late and awakened early) before this painless test, which takes about 1 hour.
• a magnetic resonance imaging (MRI) test or a computerized tomography (CAT) scan of the brain, both of which look at images of the brain

Sometimes doctors have to do blood tests (such as genetic tests) to find the cause for seizures. But remember, more than half of the cases of epilepsy are “idiopathic,” meaning that doctors can’t find a clear reason why they happen.

Treating Epilepsy

Your doctor will use the test and exam results to decide the best treatment. Medicine to prevent seizures is usually the first type of treatment used to manage epilepsy. Most kids are successfully treated with one medicine — and if the first doesn’t work, the doctor will usually try a second or even a third before trying to combine medicines.

No medicine for epilepsy is perfect and side effects are possible. The most common include tiredness, decreased alertness, and mood or behavioral concerns. Parents should watch for these and discuss any concerns with the doctor, who can make changes if needed.

If your child still has seizures after the second or third medicine tried, it’s less likely that other medications will be fully effective. In this case, more complicated treatments might be tried. These include:

• combinations of medicines
• a special ketogenic diet (a high-fat, low-carbohydrate, low-protein diet that can be hard to follow)
• implantation of a vagal nerve stimulator (an electrical pacemaker-like device put in the chest and neck)
• surgery to remove the affected part of the brain, if possible. In the right situation, epilepsy surgery can be very effective or may even cure a child of seizures, but overall it is done in less than 10% of seizure patients, and only after an extensive screening and evaluation process.

Even people who respond well to medicine sometimes still have seizures (called “breakthrough seizures”). These don’t necessarily mean the medicine needs to be changed, but let your doctor know if they happen.

Living With Epilepsy

To help prevent seizures, make sure your child:

• takes any medicine(s) as prescribed
• avoids triggers (such as stress, not eating a healthy diet, and not getting enough sleep)
• sees the neurologist as recommended — about one to four times a year — even if responding well to medicine

Keeping your child well fed and well rested and reducing unnecessary stress are all key factors that can help manage epilepsy. Common-sense precautions to take (based on how controlled the epilepsy is) include:

• Younger kids should always be supervised in the bathtub (a responsible adult should be within arm’s reach) and older kids should take showers with the bathroom door unlocked — and only when there is someone else in the house. (It’s also wise to set the temperature of the home’s hot water heater to 120ºF [48ºC] or lower so a child can’t be accidentally scalded during a bath.)
• Swimming or biking alone are not good ideas for kids with epilepsy (although they can certainly enjoy these activities with other people). A responsible adult within arm’s reach should swim with kids who have epilepsy. A helmet is required during bicycling, as it is for everyone.

With these simple safety precautions, your child should be able to play, participate in sports or other activities, and generally do what other kids like to do. State driving laws vary, but teens with epilepsy will probably be able to drive, with some restrictions, as long as the seizures are controlled.

It’s important to make sure that other adults who care for your child — family members, babysitters, teachers, coaches, etc. — know that your child has epilepsy, understand the condition, and know what to do in the event of a seizure.

Offer your child plenty of support, discuss epilepsy openly, and answer questions honestly. Kids with epilepsy might be embarrassed about the seizures or worry about having one at school or with friends.

Unfortunately, many kids with epilepsy have other neurological problems. In particular, learning and behavioral problems are common and can create more hardship for a child than the epilepsy itself. In some cases, a medicine’s side effects can make these problems worse. Such difficulties might require the help of specialists, teachers, and social workers. Consider having your child talk with a mental health counselor or psychologist if he or she struggles with these feelings or problems.

Parents caring for a child with epilepsy also might benefit from advice from specialists such as psychologists, social workers, or specialized educators. For those whose kids have more severe epilepsy, this help is critical. Specialists can help parents plan for the future (transition services) by identifying social, financial, and other community resources that will improve their child’s well-being.