Epilepsy

The Epilepsy Program at Children’s Hospital Boston 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:

• The Charlie Foundation is a group dedicated to providing information and support on the ketogenic diet.
• Matthew’s Friends is a website written by parents.
• The Epilepsy Therapy Project includes 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.

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 device 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.