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There are many ways you can help children and their families get the care they need.
Epilepsy treatment is aimed at helping your child live a seizure-free, fulfilling life. While medication is the first line of treatment, today there are many other options, including a variety of surgical procedures, noninvasive brain stimulation and special diets.
About two-thirds of children are able to get their seizures controlled by anticonvulsant medications. Many new anti-seizure medicines have come on the market in the past few decades (see this chart). If your child has been seizure-free for one to two years, sometimes he or she can be weaned off the medications.
Finding drugs that work for your child is often a process of trial and error. A particular drug may seem to work for a while, but then the seizures come back. Sometimes more than one medicine is needed to adequately control seizures. New drugs continue to be developed, so your family may have the option of enrolling in clinical studies of experimental anti-epileptic drugs.
Clinical trials for epilepsy at Boston Children’s
Sometimes, if a drug is not working, it may simply be that there is not enough of it in your child’s bloodstream. Your doctor may order blood tests to make sure that the right amount of the medicine is in the blood at all times. Sometimes, simply changing the dosing schedule can help.
Read more about treating epilepsy by the clock.
Some anti-seizure drugs can cause side effects that require a dose adjustment, a change in medication or a non-pharmacologic treatment. 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.
Another strategy for controlling seizures is a specialized diet called the ketogenic diet. It’s a challenging diet that requires a strong family commitment and qualified medical supervision. For some children, it can be as effective at controlling seizures as medications. About 30 percent of children with epilepsy can get seizure control with the ketogenic diet.
The ketogenic diet is not a “healthy” or “normal” diet, and parents cannot safely start it on their own. In fact, it’s usually started in the hospital, usually requiring a hospital stay of several days.
In normal diets, people get most of their energy from carbohydrates like bread, fruits and vegetables. On the ketogenic diet, most of the energy comes from fats, which the body metabolizes into molecules called ketones. The ketones build up in the body, a situation called “ketosis,” and are thought to act as natural anticonvulsants. However, how the diet works is not completely understood.
If your child is on the ketogenic diet, a dietitian who specializes in this diet will individually design every meal, teach you how to manage the diet at home and provide ongoing support. A typical meal includes:
You and your family will have to carefully measure out the correct amounts of fats, carbohydrates and proteins and avoid products that contain carbohydrates, including many medications, lotions and toothpastes.
Read more and see a sample ketogenic menu.
The ketogenic 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 through a tube, a special ketogenic formula can be used.
The ketogenic diet can have side effects, sometimes serious, so medical monitoring is essential. Children usually stay on the ketogenic diet for about two years and can sometimes be transitioned back to a regular diet.
More information and support:
About 30 percent of children with epilepsy aren’t helped by medication or diet therapy. Many of these children can be successfully treated through epilepsy surgery. This generally involves removing or destroying the brain tissue where the epileptic seizures start.
Surgery is a scary step and requires a variety of specialized tests to carefully plan the surgery and to ensure that it is the best option for your child. Neurosurgical teams can also use advanced brain activity tests and imaging scans during surgery to make the operation as safe and effective as possible.
If your child is believed to be a candidate for surgery, the care team will need to identify:
Pre-surgical evaluations are done in the hospital and sometimes require up to a week of long-term monitoring (LTM). LTM involves continuous electroencephalography (EEG) to monitor brain activity together with video and audio monitoring. Combining these forms of monitoring allows doctors to correlate what is happening in your child’s brain with the convulsions or other behavioral changes he may be having. Your child's medications will probably be reduced during monitoring to allow seizures to be observed.
Additional tests may include:
Sometimes, more extensive inpatient testing is needed to map the epileptic brain tissue in more detail and determine whether it can be safely removed. This testing requires surgery, but can achieve much higher resolution than EEG monitoring from the scalp:
A variety of other pre-surgical tests are used to find the areas that control functions such as language, movement, sensation and memory, so that surgeons can avoid these areas. These tests may include:
If the care team can pinpoint the “focal point” — the specific area of your child's brain that is over-firing and causing the seizures — your child may be able to have surgery to remove the abnormal brain tissue without harming neighboring brain areas. This procedure, called “resective” surgery, can often stop the seizures entirely, and most children function normally afterward.
Some centers are offering minimally invasive laser therapy for epilepsy to remove tumors or diseased tissue that is too deep inside the brain to safely access with usual neurosurgical methods. The surgeon makes a small hole in the scalp, guides a laser to the abnormal tissue under advanced MRI imaging and uses light energy to destroy the tissue with precision accuracy. Laser ablation can be an excellent option for children whose seizures originate deep within the brain, who have not been helped by medication and for whom surgery would normally be considered unsafe. More about laser therapy.
Corpus callosotomy involves cutting the major fibers that connect the two halves (hemispheres) of the brain. This cuts off communication between the two hemispheres and can prevent seizures from spreading from one side of your child's brain to the other. Corpus callosotomy is particularly effective for children who experience severe “drop attacks” in which they lose consciousness. The seizures won’t completely go away, but in most cases they become milder and less disabling. Corpus callosotomy occasionally produces problems with behavior, cognition or motor function.
A hemispherectomy involves removing or disabling one half (hemisphere) of the brain. This procedure may be used if seizures are coming from a broad area of a single hemisphere. It is only recommended for very severe epilepsy that has not responded to medications and other less aggressive surgeries. It can cause serious side effects, including motor and language skill loss, which must be weighed against the severity of the epilepsy symptoms themselves. When used appropriately, hemispherectomy can be extremely rewarding.
If a child’s seizures are not controlled by medication or diet, and if brain surgery cannot be done safely, vagus nerve stimulation (VNS) may be an option. VNS can also be helpful for children who have trouble following a medication routine or have severe side effects from multiple medications.
Seizures usually don’t go away completely with VNS, but most children see a reduction in their number and severity. Many are able to reduce their medications, giving them greater flexibility and confidence.
For VNS, the surgeon implants a small stimulator (much like a heart pacemaker) under the skin below the left collarbone or into the armpit area. Small wires attached to the stimulator deliver small pulses of electricity to the vagus nerve, one of the major nerves running along the neck to the brain. The operation usually takes less than an hour. The device is then set to stimulate the nerve at regular intervals, such as 30 seconds every five minutes; a neurologist will fine-tune the settings during follow-up visits.
This approach, also known as neuromodulation, is beginning to be tested as a treatment for drug-resistant epilepsy that cannot be effectively or safely treated with surgery. It applies a magnet or small electrical currents to the scalp, changing brain excitability. There are two main types:
More about brain stimulation in children.
If your child's seizures are not well managed by existing therapies, your care team may recommend enrolling in a clinical trial of a new drug or other experimental treatment. Being in a study sometimes means that your child has a 50-50 chance of receiving the new treatment, at least in the beginning. Each study has different ground rules, so it’s worth inquiring.
Clinical trials for epilepsy at Boston Children’s Hospital
Coping and Support
The Epilepsy Foundation
At Boston Children’s Hospital:
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”