Resources for Children and Families with Epilepsy
View a list of resources for children who have epilepsy and their families. Resources include organizations for information, advocacy, life skills and recreational activities.
Epilepsy is a brain condition that causes a child to have seizures. It is one of the most common disorders of the nervous system.
The Pediatric Epilepsy Program at Mass General for Children serves patients with seizures and related disorders.
The Mass General for Children Epilepsy Surgery Program provides surgical evaluation and treatment for pediatric patients whose epilepsy cannot be managed with medical therapy or those for whom surgery is the best option overall.
The Pediatric Neurosurgery service at Mass General for Children diagnoses and treats all neurosurgical conditions of infants, children and adolescents.
Epilepsy is a brain condition that causes a child to have recurring seizures over time. These seizures can't be linked to a short-term (acute) illness such as an infection, or a short-term injury such as a brain injury. If the cause of the recurring seizures is known, it's called symptomatic epilepsy. If the cause isn't known, it's called idiopathic epilepsy.
Epilepsy is one of the most common disorders of the nervous system. It affects children and adults of all races and ethnic backgrounds.
The brain consists of nerve cells that communicate with each other through electrical activity. A seizure occurs when one or more parts of the brain has a burst of abnormal electrical signals that interrupts normal brain signals. Anything that interrupts the normal connections between nerve cells in the brain can cause a seizure. This includes a high fever, high or low blood sugar, alcohol or drug withdrawal, or a brain concussion. But when a child has two or more seizures with no known cause, this is diagnosed as epilepsy.
There are different types of seizures. The type of seizure depends on which part and how much of the brain is affected and what happens during the seizure. The two main categories of epileptic seizures are focal (partial) seizure and generalized seizure.
Focal seizures take place when abnormal electrical brain function occurs in one or more areas of one side of the brain. Before a focal seizure, your child may have an aura, or signs that a seizure is about to occur. This is more common with a complex focal seizure. The most common aura involves feelings, such as deja vu, impending doom, fear, or euphoria. Or your child may have visual changes, hearing abnormalities, or changes in sense of smell. The two types of focal seizures are:
Simple focal seizure. The symptoms depend on which area of the brain is affected. If the abnormal electrical brain function is in the part of the brain involved with vision (occipital lobe), your child’s sight may be altered. More often, muscles are affected. The seizure activity is limited to an isolated muscle group. For example, it may only include the fingers or larger muscles in the arms and legs. Your child may also have sweating, nausea, or become pale. Your child won’t lose consciousness in this type of seizure.
Complex focal seizure. This type of seizure often occurs in the area of the brain that controls emotion and memory function (temporal lobe). Your child will likely have altered consciousness. Your child may or may not pass out, or just stop being aware of what's going on around them. Your child may look awake, but have a variety of unusual behaviors. These may range from gagging, lip smacking, running, screaming, crying, or laughing. Your child may be tired or sleepy after the seizure. This is called the postictal period.
A generalized seizure occurs in both sides of the brain. Your child will lose consciousness and be tired after the seizure (postictal state). Types of generalized seizures include:
Absence seizure. This is also called petit mal seizure. This seizure causes a brief changed state of consciousness and staring. Your child will likely maintain posture. Their mouth or face may twitch or eyes may blink rapidly. The seizure usually lasts no longer than 30 seconds. When the seizure is over, your child may not recall what just occurred. They may go on with activities as though nothing happened. These seizures may occur several times a day. This type of seizure is sometimes mistaken for a learning or behavioral problem. Absence seizures almost always start between ages 4 and 12.
Atonic seizure. This is also called a drop attack. With an atonic seizure, your child has a sudden loss of muscle tone and may fall from a standing position or suddenly drop their head. During the seizure, your child will be limp and unresponsive.
Generalized tonic-clonic seizure (GTC). This is also called grand mal seizure. The classic form of this kind of seizure has five distinct phases. Your child’s body, arms, and legs will flex (contract), extend (straighten out), and tremor (shake). This is followed by contraction and relaxation of the muscles (clonic period) and the postictal period. During the postictal period, your child may be sleepy. They may have problems with vision or speech and may have a bad headache, fatigue, or body aches. Not all of these phases occur in everyone with this type of seizure.
Myoclonic seizure. This type of seizure causes quick movements or sudden jerking of a group of muscles. These seizures tend to occur in clusters. This means that they may occur several times a day, or for several days in a row.
A seizure can be caused by many things. These can include:
An imbalance of nerve-signaling brain chemicals (neurotransmitters)
Brain damage from illness, infection, or injury, including those at birth
Medicines or illegal drugs
A seizure may be caused by a combination of these. In most cases, the cause of a seizure can’t be found.
Your child’s symptoms depend on the type of seizure. General symptoms or warning signs of a seizure can include:
Jerking movements of the arms and legs
Stiffening of the body
Loss of consciousness
Breathing problems or stopping breathing
Loss of bowel or bladder control
Falling suddenly for no apparent reason, especially when associated with loss of consciousness
Not responding to noise or words for brief periods
Appearing confused or in a haze
Nodding head rhythmically, when associated with loss of awareness or consciousness
Periods of rapid eye blinking and staring
During the seizure, your child’s lips may become tinted blue and their breathing may not be normal. After the seizure, your child may be sleepy or confused.
The symptoms of a seizure may be like those of other health conditions. Make sure your child sees their healthcare provider for a diagnosis.
The healthcare provider will ask about your child’s symptoms and health history. You’ll be asked about other factors that may have caused your child’s seizure, such as:
Recent fever or infection
Congenital health conditions
Your child may also have:
A neurological exam
Blood tests to check for problems in blood sugar and other factors
Imaging tests of the brain, such as MRI or CT scan
Electroencephalogram (EEG) to test the electrical activity in your child’s brain
Lumbar puncture (spinal tap) to measure the pressure in the brain and spinal canal and test the cerebrospinal fluid for infection or other problems
The goal of treatment is to control, stop, or reduce how often seizures occur. Treatment is most often done with medicine. Many types of medicines are used to treat seizures and epilepsy. Your child’s healthcare provider will need to identify the type of seizure your child is having. Medicines are selected based on the type of seizure, age of the child, side effects, cost, and ease of use. Medicines used at home are usually taken by mouth as capsules, tablets, sprinkles, or syrup. Some medicines can be given into the rectum or in the nose. If your child is in the hospital with seizures, medicine may be given by injection or IV (intravenous) line.
It's important to give your child medicine on time and as prescribed. The dose may need to be changed or new medicines added to best control the seizures. All medicines can have side effects. Talk with your child’s healthcare provider about possible side effects. If your child has side effects, talk to the provider. Don't stop giving medicine to your child. This can cause more or worse seizures.
While your child is taking medicine, they may need tests to see how well the medicine is working. Your child may have:
Blood tests. Your child may need blood tests often to check the level of medicine in their body. Based on this level, the provider may change the dose of medicine. Your child may also have blood tests to check the effects of the medicine on their other organs.
EEG. An EEG is a procedure that records the brain's electrical activity. This is done by attaching electrodes to the scalp. This test is done to see how medicine is helping the electrical problems in your child’s brain.
Your child may or may not need medicine for life. Some children are taken off medicine if they have not had seizures for 1 to 2 years. This will be determined by your child's provider.
If medicine doesn’t work well enough for your child to control seizures or your child has problems with side effects, the healthcare provider may advise other types of treatment. Your child may be treated with any of the below:
A ketogenic diet. This type of diet is very high in fat, and very low in carbohydrates. Enough protein is included to help promote growth. The diet causes the body to make ketones. These are chemicals made from the breakdown of body fat. The brain and heart work normally with ketones as an energy source. This special diet must be strictly followed. Too many carbohydrates can stop ketosis. Researchers aren’t sure why the diet works. But some children become seizure-free when put on the diet. The diet doesn’t work for every child.
Vagus nerve stimulator (VNS). This treatment sends small pulses of energy to the brain from one of the vagus nerves. This is a pair of large nerves in the neck. If your child is age 12 or older and has partial seizures that aren't controlled well with medicine, VNS may be an option. VNS is done by surgically placing a small battery into the chest wall. Small wires are then attached to the battery and placed under the skin and around one of the vagus nerves. The battery is then programmed to send energy impulses every few minutes to the brain. When your child feels a seizure coming on, they may activate the impulses by holding a small magnet over the battery. In many cases, this will help to stop the seizure. VNS can have side effects, such as hoarse voice, pain in the throat, or change in voice.
Your child may have a special surgery to remove the part of the brain where the seizures are occurring. The surgery helps to stop the spread of the bad electrical currents through the brain. Surgery may be an option if your child’s seizures are hard to control and always start in one part of the brain that doesn’t affect speech, memory, or vision. Surgery for epilepsy seizures is very complex. It's done by a special surgical team. Your child may be awake during the surgery. The brain itself doesn't feel pain. If your child is awake and able to follow commands, the surgeons are better able to check areas of their brain during the procedure. Surgery isn't an option for everyone with seizures. An epilepsy team will assess your child to find out if they are a good candidate for the surgery.
You can help your child with epilepsy manage their health:
If age-appropriate, help your child understand the type of seizure he or she has and the type of medicine that's needed.
Know the dose, time, and side effects of all medicines. Give your child medicine exactly as directed.
Keep a seizure log that includes the date, time, length, and aspects of your child's seizures. Bring this with you when you see your child's healthcare provider. This information will help them prescribe or change medicines.
Talk with your child's provider before giving your child other medicines. Medicines for seizures can interact with many other medicines. This can cause the medicines to not work well or cause side effects.
Work with the staff at your child's school. Tell them what to do if your child has a seizure at school, including when to call 911. Work with them to have a written care plan on file at secure places in the school. For example, your child's teacher and the school nurse should have a copy of the plan.
If your child's seizures happen often and are disabling, become familiar with the legal protections for your child. These provide equal access to educational opportunities. Talk with your school's principal for information.
Help your child avoid anything that may trigger a seizure. Make sure your child gets enough sleep, as lack of sleep can trigger a seizure.
Make sure your child visits their provider regularly. Have your child tested as often as needed.
Keep in mind that your child may not need medicine for life. Talk with the provider if your child has not had seizures for 1 to 2 years.
If your child’s seizures are controlled well, you may not need many restrictions on activities. Make sure your child wears a helmet for sports, such as skating, hockey, and bike riding. Make sure an adult supervises your child while they're swimming.
Seizures may affect your child's ability to drive a vehicle. Talk with your child's provider about the laws in your state.
Girls with epilepsy should talk with their provider about the effect of seizures on birth control and family planning.
Call your child's healthcare provider if:
Your child’s symptoms get worse or don't get better
Your child has side effects from medicine
Seizures increase in how long they last, how often they happen, or how severe they are
Call 911 if your child has a seizure that lasts longer than 5 minutes or has two seizures within 5 minutes.
A seizure occurs when one or more parts of the brain has a burst of abnormal electrical signals that interrupt normal signals.
There are many types of seizures. Each type can cause different kinds of symptoms. These range from slight body movements to loss of consciousness and convulsions.
Epilepsy is when a person has two or more seizures with no known cause.
Epilepsy is treated with medicine. In some cases, it may be treated with VNS or surgery.
It’s important to avoid anything that triggers seizures. This includes lack of sleep.
Tips to help you get the most from a visit to your child’s healthcare provider:
Know the reason for the visit and what you want to happen.
Before your visit, write down questions you want answered.
At the visit, write down the name of a new diagnosis and any new medicines, treatments, or tests. Also write down any new instructions the provider gives you for your child.
Know why a new medicine or treatment is prescribed and how it will help your child. Also know what the side effects are.
Ask if your child’s condition can be treated in other ways.
Know why a test or procedure is recommended and what the results could mean.
Know what to expect if your child does not take the medicine or have the test or procedure.
If your child has a follow-up appointment, write down the date, time, and purpose for that visit.
Know how you can contact your child’s provider after office hours. This is important if your child becomes ill and you have questions or need advice.
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