One of the most important ways that brain cells communicate is by transmitting electrical signals to each other. So the electrical firing of cells in the brain is a major part of how our bodies work and how we think and feel.
A seizure happens when cells in the brain over-fire, temporarily disrupting the brain’s normal electrical signals. Because the brain controls all aspects of the body, seizures can have many different effects on a child—depending, for example, on exactly where in the brain the abnormal electrical activity occurs.
Seizures and epilepsy affect children more frequently than adults, and they’re fairly common: About 5 percent of children in the United States experience at least one seizure at some point, and about 1 percent of children develop some type of epilepsy.
For more information about seizures, visit the Boston Children's Hospital Seizures page.
Epilepsy is a neurological condition that makes people more susceptible to having seizures. A child may be considered to have epilepsy if he has had two or more unprovoked seizures. Epilepsy is one of the most common disorders of the nervous system and affects people of all ages and ethnic backgrounds. It is the third most common brain disorder, after stroke and dementia.
There are many possible causes of epilepsy. These include:
- head injuries
- birth trauma
- congenital conditions (conditions that your child is born with) such as brain development problems
- fever or infection
- brain tumors
- maternal illness during pregnancy
- degenerative brain disorders
- metabolic problems and chemical imbalances in the body
- alcohol or drugs
In more than half of patients, however, there is no detectable cause for the epilepsy.
In some cases, the abnormal brain activity that happens during a seizure can cause damage to the brain—a special concern in a child, because his brain is busy growing and changing. So the aim of treatment is to prevent more seizures from happening. See Diagnostics and Treatment & care for more information about how epilepsy specialists look for the causes of seizures and the treatments they use.
Epilepsy can have a profound effect on a child’s life. Some children may fall or get injured during a seizure, and the episode can leave your child exhausted. Seizures may also cause your child to feel embarrassed or isolated from his friends.
Many children who have epilepsy experience dramatic changes in behavior and personality, or they may have other neurological conditions, learning difficulties or depression and anxiety. In fact, some doctors are starting to use the term “epilepsy spectrum disorder” to reflect how complex epilepsy can be.
Our epilepsy specialists at Children’s Hospital Boston stay on the lookout for these sorts of complications. Anti-seizure treatments can often improve these other symptoms, too. And neuropsychologists on our team use specialized testing to monitor your child’s cognitive abilities, learning, behavior, emotional well-being and social function, in order to develop strategies that will help your child function at his highest possible level.
To find out more about how our team at Children’s can help your child and family through the many physical and emotional challenges that can come with epilepsy, see Coping and support.
Q: What is epilepsy?
A: Epilepsy is a condition that makes people more susceptible to having seizures. A child may have epilepsy if he has had two or more unprovoked seizures. There are many possible causes, such as head injuries, brain development disorders, infections or heredity. Usually, however, there is no detectable cause for a child’s epilepsy.
Q: How common is epilepsy?
A: Epilepsy is one of the most common disorders of the nervous system and affects people of all ages and ethnic backgrounds. About 1 percent of children in the United States develop some type of epilepsy.
Q: Are seizures harmful?
A: They can be. Even small seizures can cause damage to the brain, which may impact children in a variety of ways. Some children who have epilepsy may experience dramatic changes in behavior and personality. Children can also get injured while they’re having a seizure, and seizure activity can make them feel embarrassed or isolated. The goal of treatment is to help your child live seizure-free.
Q: What do I do if my child has a seizure?
A: There are many different types of seizures; it’s best to talk to your child’s doctor about the right way to respond if he has a seizure. Your doctor may also ask you to keep a record of when the seizure occurs and what your child’s specific symptoms are. For some guidelines about what to do when a child has a seizure, see In an emergency on our Seizures page.
Q: Is there anything I can do at home to prevent my child’s seizures?
A: Your child may be able to help control his seizures through measures such as getting enough sleep and avoiding stress and flashing lights. Talk to your child’s neurologist about what may be helpful in your child’s case. The guidelines at What you can do at home may also be helpful.
Q: What if epilepsy medications don’t work?
A: The possibilities for treating epilepsy have expanded greatly in recent years. Treatment strategies include:
- Anti-seizure medicines are the most common therapy. There are now many different anti-seizure medications, so your child’s epileptologist may be able to try different ones.
- A specialized high-fat, low-carbohydrate diet called a ketogenic diet may also be used to help control your child’s seizures.
- If your child’s seizures are not well controlled by medication or the ketogenic diet, there are also a number of surgical options. This generally involves performing brain surgery to remove the brain tissue where the epileptic seizures start or to prevent their spread.
- A relatively new type of treatment for seizures that are hard to control is vagal nerve stimulation (VNS), in which a small pacemaker is implanted under the skin below the collarbone to deliver small pulses of electricity to the vagal nerve, one of the major nerves running along the neck to the brain.
Q: What is the long-term outlook for a child with epilepsy?
A: Most children who have epilepsy can achieve good seizure control with treatment. Our goal is to help your child live seizure-free and without side effects from treatment. In some cases, childhood seizure disorders resolve as a child grows up. So if your child is taking anti-seizure medication and he has hasn’t had seizures for one to two years, his doctor may try taking him off his medications.
Q: Will my child’s epilepsy affect his behavior or school performance?
A: It could. Epilepsy is sometimes associated with learning or behavior difficulties or other neurological or psychiatric issues. Talk with your child’s medical team about any difficulties he may be having.
Q: My child has to come to the hospital for an appointment, testing or a procedure. Should I talk to him about it ahead of time?
A: Yes. It’s important to talk with children—even young children—if you know a test or procedure is about to happen. Make sure your child gets the information that’s appropriate for his age and level of understanding.
If you’re coming for an electroencephalogram (EEG), you and your child may also find it helpful to view this walkthrough of an EEG study together.
If your child has a seizure for the first time, contact his primary care doctor. For guidelines about what to do if your child has a seizure, see In an emergency on our Seizures page.
Talk with your child’s doctor about how you can protect your child in case he has another seizure, and what you should do if he does have one. Some general guidelines are:
Your child should wear an appropriate helmet when playing sports such as skating, skateboarding and riding a bicycle.
Your child should always have a buddy or adult with him when he goes swimming.
Talk with your child’s medical team about whether he can drive. Look into any laws your state may have about people with epilepsy or seizures operating a motor vehicle.
Tell your child’s school, babysitter and family friends that he has seizures, and tell them what they should do if he has one.
If your child is taking anti-seizure medication:
- Make sure you refill your child’s prescriptions before the medicine runs out.
- Make sure you give your child his medication on time.
- Do not give your child more or less medicine than prescribed without asking your child’s doctor.
- If an emergency occurs, emergency health care providers will need to know that your child is taking anti-seizure medication. Talk with your doctor or pharmacist about getting a medication identification bracelet or necklace for your child.
Useful medical terms
Diagnosing the cause of your child’s seizures and finding effective ways to manage them can be an involved process. Along the way, your child may have a variety of tests and procedures and may see many different specialists, and it can be hard to keep them all straight.
It’s often helpful to keep a notebook where you can write down the names of the doctors, nurses and other health care professionals who are caring for your child, along with any terms they use that are new to you. We hope the glossary below will also be helpful.
Child Life specialists are specially trained professionals who use play as a way to help children express their fears and concerns and understand the hospital environment. They have an especially important role if your child is in the hospital as an inpatient.
Cortical stimulation is a test used to get a very detailed blueprint of your child’s brain function—on a millimeter-to-millimeter scale. Wires are placed directly on the surface of the brain and used to monitor its activity. This is similar to electrocorticography (EcoG). But unlike EcoG, which is used to locate the tissue causing seizures, cortical stimulation is used to find the tissues with important functions—the tissues we don’t want to damage during surgery.
During testing, we stimulate the wires one by one, temporarily shutting down tiny regions of the brain. Then we ask your child to perform certain tasks in order to see if that area is needed for those functions.
Dietitians have specialized training in nutrition. They, along with nurses and doctors, help families adopt the ketogenic diet. They also provide long-term follow-up for children using the diet.
Electroencephalography, also called an electroencephalogram (EEG), is a test that records brain waves picked up by 26 or more tiny wires that are attached to the scalp. An EEG can show changes that may be happening in the electrical activity of your child’s brain. The instruments are so sensitive that they pick up even small seizures that don’t lead to physical convulsions. This test can show where in the brain the seizures start and how they travel through the brain.
Electrocorticography (EcoG), also called subdural EEG, is EEG in which recordings are made from wires placed directly on the surface of the brain, rather than on your child’s scalp. The EEG wires used in EcoG are often referred to as “grids and strips.” EcoG can be used to locate epileptic tissue in your child’s brain and to plan a surgery to remove it; it may also be performed during surgery to guide the neurosurgeon.
Epileptologists are neurologists who care for patients with epilepsy.
Evoked cortical potentials ( evoked potentials, EPs) is a type of testing done to help plan epilepsy surgery and make sure that the surgery is not going to damage parts of the brain that have important functions. There are three kinds of EP studies:
- visual (seeing)
- auditory (hearing)
- somatosensory (sensation)
Electrodes are placed on your child’s scalp to measure electrical activity in your child’s brain as he watches a TV screen, listens to sounds, or feels mild stimulation on an arm or leg. The goal is to learn which parts of his brain help him see, hear, and feel.
Grids and strips are thin strips of silicon containing EEG wires used for electrocorticography (EcoG). A neurosurgeon opens your child’s skull in order to place them directly on the surface of the brain. The skull is closed again, and the output from the wires is recorded and analyzed in depth. The grids and strips are then removed later on.
Ketogenic diet is a medically prescribed diet that is sometimes used as a treatment for epilepsy.
Magnetic resonance imaging (MRI) is a type of scan that gives a physical picture of the brain based on the magnetic properties of water molecules in the brain. Sometimes the brain tissue that is causing your child’s seizures has an abnormal structure that can be seen in this image.
Neurologists are doctors who specialize in the nervous system, including the brain. Your child’s neurologist has primary responsibility for his care, overseeing what is being done by all of the other specialists. Neurologists who care for patients with epilepsy are also called epileptologists.
Neurophysiologists are doctors who specialize in how the nervous system functions. They interpret electroencephalograms (EEGs) and other tests to locate epileptic tissue in the brain.
Neuropsychologists perform neuropsychological testing to assess the effects that epilepsy and underlying disorders may have on a child’s brain. They monitor your child’s cognitive abilities, learning, behavior, emotional well-being and social function, and develop plans to help him physically and emotionally.
They may also test skills that are controlled by specific regions of the brain; if the neuropsychologist finds that your child is having problems with a particular type of function, that may reveal which part of his brain is having the seizure activity.
Neurosurgeons are doctors who perform surgery on the brain and other parts of the central nervous system.
Neuroscience nurses are registered nurses who have specialized training and experience in caring for children with neurological disorders including epilepsy.
Nurse practitioners are registered nurses with advanced training. They may oversee care, prescribe medications or perform certain procedures. Some nurse practitioners serve as surgical care coordinators.
Positron emission tomography (PET) and single photon emission computed tomography (SPECT) scans are advanced brain mapping tests. Unlike other imaging scans such as MRI, these tests create maps of how the brain works. A harmless radioactive tracer is injected into your child’s bloodstream through an IV, then a scan is taken of his brain. The tracer shows up wherever the brain is most active.
Radiologists are doctors who perform imaging tests. Radiologists who perform these tests on the brain are sometimes called neuroradiologists.
Social workers provide support for the many challenges a family may face when a child is being treated for epilepsy. A few examples of their roles include helping with health care coverage, organizing transportation, getting counseling services for families and communicating with schools.
Surgical care coordinators are nurse practitioners who organize appointments and testing for surgery.
Vagal nerve stimulation (VNS) is a relatively new type of treatment for seizures that are hard to control. A surgeon implants a small pacemaker under the skin below the left collarbone, and small wires attached to the pacemaker deliver small pulses of electricity to the vagal (or “vagus”) nerve, one of the major nerves running along the neck to the brain. This can reduce the number and severity of seizures.
Wada testing is done to learn which side of your child’s brain controls certain functions. An anesthetic is injected to temporarily put one side of the brain to sleep. Your child is then asked to perform certain tasks (such as remembering words), in order to see if that side of the brain is needed for those functions. The procedure is then repeated on the other side.
Questions to ask your doctor
You and your family are key players in your child’s medical care. It’s important that you share your observations and ideas with your child’s medical team and that you, in turn, understand their recommendations and any treatment options they may present to you.
If your child is having seizures, you probably already have a lot of questions on your mind. But at a medical appointment, it can be easy to forget the questions you wanted to ask. It’s often helpful to jot them down ahead of time so that you can leave the appointment feeling like you have the information you need.
If your child is old enough, you may want to suggest that he write down what he wants to ask, too.
Some of the questions you may want to ask include:
- What could be causing my child’s seizures?
- Does he have epilepsy?
- Are the seizures harmful to my child?
- What kind of testing is my child going to need? What’s going to happen at the test?
- What can I do to protect my child in case he has a seizure again?
- What do I do if he does have a seizure?
- What are the treatment options?
If medications are prescribed:
- How much should I give my child? How often?
- What are the possible side effects?
- Are there other medications I should not give my child while he’s on this medication?
- What is the long-term outlook for his condition?
- When does my child need to see you or another specialist again?
If you’ve been keeping notes about your child’s seizures, be sure to bring those with you to your appointment.
|One patient's story|
One of our patients wrote a post on the Children’s blog Thrive (December 1, 2009), in which she describes her difficult journey and successful treatment with an experimental method.
|Children speak: What it’s like to be a medical research subject|
If you’re considering a clinical study at Children’s, you and your child may want to watch this video. The real experts on clinical research studies—the children participating in them—tell about their experiences.