Our Health Topics

Pediatric epilepsy and seizure disorder

  • Overview

    Epilepsy is a condition in which a child has unprovoked seizures. It’s a disorder that affects many people, especially children. But that doesn’t change the fact that seizures are frightening, and epilepsy can feel like mystery. If your child has started having seizures or has been diagnosed with epilepsy, we at Boston Children's Hospital know that’s a mystery you want to get to the bottom of.

    • Seizures happen when some part of the brain over-fires, disrupting its normal electrical signals.
       
    • There are many different types of seizures: Some are easy to recognize, as when your child’s body shakes and he becomes temporarily less aware, whereas some seizures don’t have any outward signs at all.
       
    • A child may have epilepsy if he has had two or more unprovoked seizures.
       
    • About 1 percent of children in the United States develop some type of epilepsy. Children are affected more frequently than adults.
       
    • Sometimes epilepsy is caused by an underlying disease, injury or brain development disorder, but for most children, there is no detectable cause.
       
    • In some cases, the abnormal brain activity that happens during a seizure can cause damage to the brain. So seizures and epilepsy are a special concern in children, because children’s brains are busy growing and changing.

    Treatments for epilepsy have expanded greatly in recent years. Today, doctors use many different medications, specialized diet and a wide range of surgical strategies to manage children’s seizures. Finding a treatment approach that works for your child may be a long and difficult process. However, most children with epilepsy achieve good seizure control with treatment. The goal is to help your child live seizure-free.

    Epilepsy sometimes has other effects on a child’s life, including changes in behavior and personality or other neurological conditions and learning difficulties. Identifying these sorts of problems and intervening to help your child both physically and emotionally are important aspects of caring for a child with epilepsy.

    How Boston Children's Hospital approaches epilepsy

    In 1944, Children’s neurologist William Lennox, MD, developed the Children’s Seizure Unit, the first comprehensive pediatric epilepsy unit in the world. Since then, we have stayed at the forefront of pediatric epilepsy research and care.

    Today we are nationally recognized as a Level 4 Epilepsy Center by the National Association of Epilepsy Centers for delivering the highest level of care, including comprehensive evaluation, testing, treatment and counseling for children with epilepsy and seizures. We are one of only a few Level 4 Epilepsy Centers in the country entirely dedicated to caring for children.

    Our Epilepsy Program integrates specialists from several fields, including neurology, neurosurgery, radiology and nutrition. That means that as we care for your child, we’re able to consider every treatment possibility for him. We work as a team, carefully coordinating our treatment plans with each other.

    Our epilepsy services include:

    • experienced pediatric diagnostic laboratories
       
    • advanced testing, such as intraoperative MRI, to make surgeries as precise and effective as possible
       
    • neuropsychological testing to help locate epileptic brain tissue and to help your child function at his highest possible level
       
    • social workers and Child Life specialists who are experienced in working with children with epilepsy and their families
       
    • expertise in implementing the ketogenic diet to manage seizures
       
    • surgical placement and medical management of vagal nerve stimulation therapy
       
    • an extremely active epilepsy research program, including:
      • drug trials
      • innovations that make surgery safer and more effective
      • development of entirely new treatment methods for children with epilepsy

    Our experience caring for children with epilepsy makes us sensitive to the challenges that epilepsy may bring to your child and your whole family. We place special importance on supporting your family and making your child’s care as easy for him as we can—whether he’s receiving ongoing treatment with us or coming to Children’s only for a diagnostic test.

    Our epilepsy specialists provide outpatient services in Boston, Lexington, Waltham and Wilmington.

     

    Keeping your child safe during a seizure

    For information on everyday habits that can help keep your child safe, see "What you can do at home". For guidelines on what to do when a seizure happens, go to "In an emergency" on our Seizures page.

     Transitioning from pediatric to adult care
     More than 9 million children in the United States are living with a chronic illness. Every year, 500,000 of these children turn 18. As they join their fellow adolescents in struggling to achieve optimal independence, they also face a serious issue they may not be prepared for: the transition of their medical care. Read Children’s tips for helping kids – and their families – make this key transition.

    Epilepsy: Reviewed by Blaise Bourgeois, MD, and Joseph Madsen, MD
    © Children’s Hospital Boston; posted in 2010

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  • In-Depth

    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
    • poisoning
    • fever or infection
    • brain tumors
    • maternal illness during pregnancy
    • heredity
    • degenerative brain disorders
    • stroke
    • metabolic problems and chemical imbalances in the body
    • alcohol or drugs
    • medications

    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.

    FAQs

    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.

    To read more about talking to your child and getting ready to come to the hospital, go to The hospital experience on the Children’s For Patients and Families website.

    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.

     What you can do at home 

    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.

  • Tests

    From your child’s first evaluation at Children’s Hospital Boston, we will consider you an integral part of the care team. We will rely on your observations of your child’s seizures and will work with you to understand his situation and find the right treatment plan.

    If your child is experiencing unexplained seizures, we try to answer these questions:

    • Is your child experiencing seizures or some other problem that looks like seizures?
    • Do the seizures represent epilepsy, or are they being caused by some other disorder?
    • What part of the brain is causing the seizures?
    • How can we manage your child’s seizures and help him live seizure-free?

    You and your child will meet with a neurologist, who will review your child’s medical history and family history and perform a specialized physical exam.

    We may ask you questions such as:

    • At what time of day do your child’s seizures occur?
    • How long do they last?
    • What parts of your child’s body are affected?
    • What is his mental awareness like immediately before and after a seizure?

    To learn about your child’s seizures and to plan treatment, we may perform a number of specialized tests including:

    • blood tests (such as blood sugar, complete blood count, electrolytes and liver and kidney function tests)
       
    • electroencephalography (EEG), a test that records brain waves using tiny wires attached to the head, in order to show the abnormal electrical activity that’s producing your child’s seizures
       
    • brain imaging tests including CT, MRI and PET scans to look for any scar tissue, tumors or brain malformations that may be causing your child’s seizures

    Many of these tests are performed on an outpatient basis, meaning that your child doesn’t have to stay overnight. Specialists in our neurophysiology laboratories perform about 5,000 electroencephalograms (EEGs) each year, making us exceptionally experienced. Our technologists specialize in working with children: Your child will be tested by someone who is dedicated to providing excellent, compassionate care. You can stay with your child throughout testing.

    In addition to studying your child’s seizures, we watch for other problems that may be related to your child’s epilepsy, such as learning or behavior difficulties or depression. 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.

    EEG Slideshow

    If you are coming to Children’s for an EEG or other diagnostic test, you and your child probably have a lot of questions about what to expect. You may find it helpful to view this walkthrough of an EEG study together.

  • The Epilepsy Program at Boston Children's Hospital brings together a diverse array of specialists to care for children with epilepsy. That means that we can consider every treatment possibility for your child, and the many health care professionals who care for your child all closely coordinate treatment plans with each other.

    If your child's epilepsy is caused by another disease, injury or brain development disorder, we also coordinate our care with other groups at Children's who specialize in treating that condition.

    We are devoted to helping your child live a seizure-free, fulfilling life.

    Anti-seizure medication

    Anti-seizure medicines are the most common therapy for epilepsy. These medicines are often called anticonvulsants. The use of medication is also called pharmacological management.

    • Sometimes more than one medicine is needed to adequately control seizures.
       
    • In many cases, there needs to be a certain amount of an anti-seizure drug in your child's bloodstream in order for the medicine to be effective. Therefore, a doctor may order blood tests to make sure that the right amount of the medicine stays in your child's blood at all times.
       
    • In some cases, your family may have the option of enrolling in clinical studies of experimental anti-seizure drugs.
       
    • About two-thirds of children are able to get their seizures controlled by medication.

    Finding drugs that work for your child is often a process of trial and error. You may find that a particular drug seems to be working, but then the seizures come back. A variety of anti-seizure drugs is now available, so if a particular drug does not succeed in controlling your child's seizures, his neurologist may try others.

    Some anti-seizure drugs can cause side effects, so you'll need to understand the possible side effects of your child's medication and tell your child's doctor about any side effects he experiences. For young women, it's also important to know that anti-seizure medications can make oral contraceptives less effective and can be harmful to a fetus.

    Sometimes a child's epilepsy resolves, so your child may not need to take anti-seizure medications for his whole life. Your child's doctor may try taking your child off his medications if he has been seizure-free for one to two years.

    Ketogenic diet

    Another strategy for controlling seizures is a specialized diet called the ketogenic diet. A physician prescribes this diet, just like medicines. Parents cannot safely start it on their own.

    Normally, most people eat a diet that includes a large amount of carbohydrates (such as bread, fruits and vegetables), so their bodies get most of their energy from carbohydrates. On the ketogenic diet, your child eats a large amount of fat and very few carbohydrates, so his body gets most of its energy from fats.

    When the body metabolizes fats, it makes ketones. So when a child is on the ketogenic diet, molecules called ketones build up in his body, a situation called “ketosis.” Doctors generally believe that one reason this diet can prevent seizures is that those ketones act as the body's own anticonvulsants. However, the mechanism by which the diet works is not completely understood.

    The ketogenic diet was first introduced about a century ago, before the advent of most anti-seizure medicines, but it has gained renewed popularity in recent years. For some children, the ketogenic diet can be as effective at controlling seizures as anti-epileptic medications. About 30 percent of children who have epilepsy get their seizures controlled by the ketogenic diet.

    When a child is on the ketogenic diet, a typical meal includes:

    • a small amount of protein, such as meat, eggs or cheese
    • a small amount of carbohydrates, especially fruits or vegetables
    • a larger amount of fat, such as heavy cream, butter, oil or mayonnaise

    Meals are individually designed for your child by a dietician who specializes in the ketogenic diet. The diet is not nutritionally balanced, so your child will also need vitamin and mineral supplements. For infants and for children who need to be fed though a tube, a special formula can be used to give the ketogenic diet.

    The ketogenic diet is started in the hospital, because we need to watch your child closely to make sure he tolerates the diet well. A child usually needs to stay in the hospital for three to five days.

    While your child is in the hospital, dieticians experienced with the ketogenic diet will teach you how to manage the diet at home. You and your family will have to carefully measure out the correct amounts of fats, carbohydrates and proteins. You'll also have to avoid other products that contain carbohydrates, such as many medications and toothpastes. Your commitment to following the diet is essential to making it successful, and we will provide ongoing support to help you do that. Your child will have regular follow-up appointments with his dietician.

    It's essential that doctors and other specialists continue to monitor your child, because just like the medicines used to treat epilepsy, the ketogenic diet can sometimes have side effects.

    Children usually stay on the ketogenic diet for about two years. We then slowly change your child's diet back to a regular diet.

    A number of resources offer information on the ketogenic diet:

    Epilepsy surgery

    Unfortunately, for about 30 percent of children who have epilepsy, medication and the ketogenic diet don't work well. Their epilepsy is referred to as “intractable epilepsy.”

    Many of these children can be successfully treated through epilepsy surgery. This generally involves performing brain surgery to remove the brain tissue where the epileptic seizures start or to prevent their spread.

    We know that surgery on your child's brain can be a frightening prospect. We use a variety of specialized tests before surgery to carefully plan the surgery and to ensure that it is the best option for your child. At every step of evaluation, testing and treatment, we thoroughly discuss the options with your family. Ultimately, all decisions about your child's treatment are made by your family.

    If your child does undergo surgery, we do everything we can to make sure the surgery is safe and effective. In addition to performing extensive testing before surgery, for example, Children's neurosurgery teams also use advanced brain activity tests and imaging scans during surgery. Technologies such as the intraoperative MRI system at Children's—the first in a pediatric hospital—enable us to perform the most precise surgeries possible, stopping seizures while safeguarding the brain's function.

    A child who is admitted to the hospital for evaluation or surgery comes to a unit that is exclusively devoted to children undergoing neurology and neurosurgery care and is staffed by nurses who  specialize in caring for children who have seizures and other disorders of the nervous system. You always have the option to stay with your child while he is in the hospital. His doctor will visit personally each day, providing ample opportunity for you to talk with him.

    Pre-surgical evaluation for epilepsy surgery

    If your child's neurologist believes that he is a candidate for surgery, his care team will need to identify:

    • whether your child's seizures always start in one area of the brain, and exactly where that spot is
    • whether that part of the brain can be removed without damaging important brain functions

    When your child is being evaluated for epilepsy surgery, he will be admitted to the hospital so that we can continuously monitor his brain activity and behavior. Typically, our patients stay for three to seven days of long-term monitoring (LTM). We encourage a parent or family member to stay, and you can spend the night in your child's room.

    LTM involves continuous electroencephalography (EEG) and video and audio monitoring. By monitoring your child with video at the same time that his brain activity is being monitored with EEG, we can correlate what is happening in his brain with the convulsions or other behavioral changes he may be having. We will probably reduce your child's medications while he is in the hospital for monitoring, since the plan is to facilitate seizures so that we can observe them.

    Your child may undergo additional tests at this time, including:

    • brain imaging studies, including MRI, PET, and SPECT
    • neuropsychological testing

    After the testing, we may recommend another round of inpatient testing to get a very detailed map of where your child's epileptic brain tissue is located and determine whether it can be safely removed. This more extensive testing may include surgically placing EEG wires inside your child's head:

    • In subdural EEG monitoring (also called electrocorticography, EcoG), a surgeon opens the skull and places thin strips of silicon containing EEG wires (often called “grids and strips”) directly on the surface of the brain.
       
    • The surgeon may also place wires inside the brain. This uses an advanced “stereotaxic” procedure, in which specialized imaging performed during surgery shows the surgeon where to place the wires.

    Because invasive monitoring can achieve much higher resolution than monitoring from the scalp, we use it for about half of the children who are being considered for epilepsy surgery.

    We take every precaution to make sure that surgery is not going to damage crucial parts of your child's brain. Before surgery, we may perform a variety of tests to find the areas that control functions such as language, movement, sensation and memory. We want to make sure that removing the diseased brain tissue is not going to damage these areas. These tests may include:

    • evoked cortical potentials (EPs)
    • cortical stimulation
    • Wada testing

    We will recommend surgery only if we believe it is the very best treatment option for your child. The Epilepsy Surgery Conference takes place every week to discuss any surgery we are planning. The conference is attended by a wide array of people: neurologists, neurosurgeons, neuropsychologists, nurses, social workers and others. Together we discuss all aspects of your child's case and carefully consider all options.

    If the team determines that surgery is not an option, we will recommend alternative therapies.

    Focal resection

    If we can pinpoint a specific area of your child's brain (the “focal point”) that is over-firing and causing the seizures, your child may be able to have surgery to remove the abnormal brain region. Often, this procedure, called “resective” surgery, entirely stops the seizures.

    The extensive testing we do before surgery helps surgeons know exactly where they need to cut in order to both remove the epileptic tissue and save the important tissue. As a result, most children function normally after resective surgery.

    Even with all of these advances, resective surgery sometimes is not possible, or it may not succeed in controlling your child's seizures. In certain cases, another surgery may be used.

    Corpus callosotomy

    Corpus callosotomy involves cutting the major fibers that connect the two halves (hemispheres) of the brain. It is particularly effective for patients who experience severe “drop attacks” in which they lose consciousness. Stopping the communication between the two hemispheres can prevent the epilepsy from spreading from one side of your child's brain to the other.

    Following corpus callosotomy, seizures do not go away, but in most cases they become milder and less disabling. Patients continue taking medications after the surgery. Corpus callosotomy rarely produces problems with behavior, cognition or motor function.

    Hemispherectomy

    A hemispherectomy is a complex procedure that involves removing or disabling one half (hemisphere) of the brain. This procedure may be used if your child's seizures are coming from a broad area of a single hemisphere. It is only recommended for very serious cases in which seizures have not responded to medications and other less aggressive surgeries.

    Children may experience side effects, including motor and language skill loss. But in most of the children for whom we consider hemispherectomy, the process that's producing the seizures is already causing some weakness, and quite often, the deficits a child has after surgery are minimally worse than what was present before the operation. In properly selected cases, the results can be extremely rewarding.

    A fall 2007 article from Dream, a Children's magazine for patients and families, tells the story of one Children's patient who underwent this surgery.

    Vagal nerve stimulation (VNS)

    A relatively new type of treatment for seizures that are hard to control is vagal nerve stimulation (VNS). For this treatment, a surgeon implants a small pacemaker (much like a heart pacemaker) under the skin below the left collarbone. 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.

    VNS is currently used only for children older than 12. Most children see a reduction in the number and severity of seizures after the device is implanted.

    VNS may be an option if your child's seizures are not controlled by medication or diet or if your child is not eligible for surgery. It can also be helpful for patients who have trouble following a medication routine or have severe side effects from multiple medications. Few patients find that their seizures completely go away with VNS, but many are able to reduce their medications, giving them greater flexibility and confidence.

    Children's was one of the first hospitals to test VNS in children and has been using it regularly since the mid-1990s. We have performed more than 500 VNS operations, making us one of the most experienced pediatric VNS centers.

    Epilepsy

    The vagal nerve stimulator consists of two parts:

    • a pulse generator: a smooth metal disk about the size of a half-dollar
    • electrodes: thin, plastic-coated wires that run from the pulse generator to the vagal nerve

    A surgeon implants the pulse generator under your child's collarbone or into the armpit area, then threads the wires under the skin to a second incision over the vagal nerve. The wires are then carefully wrapped around the vagal nerve. The surgery usually takes less than an hour.

    The devic is set to stimulate the nerve at regular intervals. A typical setting might be 30 seconds every five minutes; a neurologist will fine-tune the settings in the weeks following surgery. Your child is given a small magnet that he can use to start stimulation when a seizure is coming on or to prevent stimulation for a period of time.

    Experimental treatment

    If your child's seizures are not well managed by existing therapies, or if we believe that experimental methods would make his treatment safer, we may recommend a clinical trial. Our team will take care to explain these options to your family. Participation in any clinical trial is completely voluntary.

    You can read more about our research and the treatments we are developing for children with epilepsy at Research & innovations.

    Visit the Children's clinical research site to learn about clinical trials throughout Children's.

    Coping and support

    Epilepsy can be overwhelming—not only for your child, but for your whole family. From your first visit at Children's, you'll work with a team of professionals who are committed to supporting you.

    There are a variety of resources at Children's to help you and your family through this difficult time:

    Patient education: From office visits to inpatient testing or surgery, our nurses will be on hand to walk you through your child's treatment and help answer any questions you may have. They will also reach out to you by phone, continuing the care and support you receive while you're at Children's.

    Parent to parent: Want to talk with someone whose child has been treated for epilepsy? Our social worker in the Epilepsy Program and other members of our medical team can put you in touch with another family who's been through the same experience that you and your child are facing. We work to provide very personalized matches, so that you can talk with someone who's been down a similar road. In addition, the Epilepsy Foundation offers support groups for parents and teens through their local affiliate organizations.

    Faith-based support: Your child's seizures and their impact on him may be hard on your whole family. You may also find yourself needing to make difficult decisions about your child's treatment. If you and your family are in need of spiritual support, we can connect you with the Children's chaplaincy. Our program includes nearly a dozen clergy representing Episcopal, Jewish, Lutheran, Muslim, Roman Catholic, Unitarian and United Church of Christ traditions who will listen to you, pray with you and help you observe your own faith practices during your treatment experience.

    Social work and mental health professionals: As part of the broader social work program at Children's, the Epilepsy Program has a dedicated social worker who has helped many other families whose children have epilepsy. Our social worker can offer assistance with issues such as coping with your child's diagnosis, navigating educational issues and dealing with financial difficulties. We can also assist with logistics like finding temporary housing near the hospital if your family is traveling to Boston from another area. And if your child or family is in need of psychological counseling, we can help you find an appropriate provider.

    To find out more about support services available to families at Children's, you may want to explore  Family resources on the Children's  For Patients and Families website, which also offers information on getting to Children's, accommodations and navigating the hospital experience.

    Read about one of our patients

    You can read about one of our patients and see how her neurologists used many different tools to peer inside her brain and pin down the sources of her seizures. During her treatment, she also made a big contribution to neuroscience research. Her story was told in a summer 2009 article in Dream, a Children's magazine for patients and families, and in a fall 2009 article in Vector, a Children's magazine on research and innovations.

    Create your own personal web page

    With our free Carepages service, you can set up a unique webpage for your child. Carepages makes it easy to stay in touch with family and friends when your child is undergoing treatment.

  • Your Story

    Kate's story

    "Thanksgiving of 1999 was going to be a great day.

    My mom was coming home from the hospital after having surgery, and our entire family would be together for a big dinner that afternoon. It was shaping up to be a great holiday—that is, until I had my first seizure."

    For nearly 10 years, Kate Curreri suffered from severe epileptic seizures and lived with life-altering side effects from her many medications.

    In her first-person account, Kate shares her story about how an experimental treatment has changed her life.

     

     

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