If you have a child with epilepsy, you're not alone – 2.5 million Americans have this disorder. Anyone can develop epilepsy at any age, but the majority of new diagnoses are in kids. About two-thirds of all kids with epilepsy outgrow the seizures that accompany it by the time they're teens.
Cook Children's recognized as a Level 4 epilepsy center. The National Association of Epilepsy Centers recognizes Cook Children's Comprehensive Epilepsy Program as a Level 4 Pediatric Epilepsy Center. Level 4 epilepsy centers have the professional expertise and facilities to provide the highest level medical and surgical evaluation and treatment for patients with complex epilepsy.
Epilepsy is a disease of the central nervous system in which electrical signals of the brain misfire. These disruptions cause temporary communication problems between nerve cells, leading to seizures. A seizure can be thought of as an "electrical storm" that causes the brain to do things that the person having the seizure doesn't intend.
Having a single or sometimes even several seizures is not necessarily considered epilepsy. Kids with epilepsy are prone to having multiple seizures over a fairly long period of time (months to years).
- Is not the only cause of childhood seizures
- Is not a mental illness
- Does not necessarily affect intelligence
- Is not contagious
- Does not typically worsen over time
In less than half the cases of epilepsy, there is a specific identifiable brain problem that causes the seizures. These include:
- Infectious illness (such as meningitis or encephalitis)
- Brain malformation during pregnancy
- Trauma to the brain (including lack of oxygen) due to an accident before, during, or after birth or later in childhood
- Underlying metabolic disorders (chemical imbalances in the brain)
- Brain tumors
- Blood vessel malformation
- Chromosome disorders
In kids, more than half of epilepsy cases are idiopathic (meaning there's no other identifiable cause or visible problem in the brain). In most of these, there's a family history of epilepsy or the condition is believed to be genetic (kids with a parent or other close family member with epilepsy are more likely to have it, too). Researchers are working to determine what specific genetic factors are responsible for these forms of epilepsy.
Seizures vary in severity, frequency, duration (from a few seconds to several minutes), and in their appearance. There are many different kinds of seizures, and what occurs during one depends on where in the brain the electrical signals are disrupted.
The two main categories of seizures are generalized seizures, which affect the whole brain all at once, and partial seizures, in which only part of the brain is mostly affected. Some people with epilepsy experience both kinds. Also, the electrical problem in a partial seizure can spread to cause a generalized seizure.
Seizures can be scary – a child may lose consciousness or jerk or thrash violently and may appear to stop breathing or have difficulty breathing. Milder seizures may leave a child momentarily confused or unaware of his or her surroundings. Some seizures are so brief and minor that only careful observation or an experienced eye will detect them – a child may simply blink or stare into space for a moment before resuming normal activity. Even in those cases, it is usually obvious to parents that a child is having episodes of concern.
After seizures that last more than 30 seconds, most kids are exhausted, tired, sleepy, disoriented, confused, or even combative and agitated for minutes to hours. This is known as the postictal phase.
During a seizure, it's very important to stay calm and keep your child safe. Be sure to:
- Lay your child down away from furniture, stairs, radiators, or other hard or sharp objects.
- Put something soft under his or her head.
- Turn your child on his or her right side so fluid in the mouth can come out.
- Never stick anything in your child's mouth or try to restrain him or her.
- Do your best to note how often the seizures take place, what happens during them, and how long they last and report this to your doctor. Once a seizure is over, watch your child for signs of confusion or the postictal phase. He or she may want to sleep and you should allow that. Do not give extra medication unless the doctor has prescribed it.
- Kids who experience partial seizures may be frightened or confused during or after the seizure. Offer plenty of comfort and reassure your child that you're there and everything is OK.
Most seizures are not life threatening, but if one lasts longer than 5 minutes or your child seems to have trouble breathing afterward, call 911 for immediate medical attention.
If your child has seizures, staring spells, confusion spells, shaking spells, or unexplained deterioration in behavior or school performance and your doctor suspects epilepsy, our neurosciences team will evaluate your child to determine if her or his symptoms suggest epilepsy. Your child's pediatric neurologist will take your child's medical history and examine your child, looking for findings that suggest problems with the brain or with the rest of the neurological system.
If the doctor suspects epilepsy, tests will be ordered, which may include:
- An electroencephalogram (EEG), which measures electrical activity of the brain via harmless sensors secured to the scalp while the child lays on a bed. Usually the doctor will ask that a child be sleep-deprived (put to bed late and awakened early) before this painless test, which typically takes about 1 hour.
- A magnetic resonance imaging (MRI) test
- A computerized tomography (CAT) scan of the brain, both of which look at images of the brain
- Your child may also undergo video monitoring in our EMU center, and your doctor may request 3-D modeling to get a clear picture of where the electrical activity is misfiring in the brain
Your neurology team will use the test and exam results to determine the best form of treatment. Medication to prevent seizures is usually the first type of treatment prescribed for epilepsy management. Most kids are successfully treated with one medication – and if the first doesn't work, the doctor will usually try a second or even a third before resorting to combinations of medications.
No medication for epilepsy is perfect and side effects are possible. The most common include tiredness, decreased alertness, and mood or behavioral concerns, so parents should watch for these and discuss concerns with the doctor.
Nowadays, many choices are available and most kids treated with antiseizure medications do not experience worrisome side effects. Nevertheless, discuss any concerns you have with the doctor so that dose adjustments or appropriate changes can be made if appropriate.
Rarely, blood tests might be needed to monitor a medication's level in the bloodstream or to watch for side effects.
If your child still has seizures after the second or third medication tried, it's less likely that subsequent medications will be fully effective. In this case, more complicated treatments may be recommended or tried. These include:
- Combinations of medications
- A special ketogenic diet (a high-fat, low-carbohydrate, low-protein diet that's often difficult to follow)
- Implantation of a vagal nerve stimulator (an electrical pacemaker-like device placed in the chest and neck)
- Surgery to remove the affected part of the brain, if possible. In the right situation, epilepsy surgery can be very effective or may even cure a child of seizures, but overall it is done in less than 10% of seizure patients, and only after an extensive screening and evaluation process.
Even people who respond successfully to medication sometimes have seizures (called "breakthrough seizures"). These don't mean the medication needs to be changed, although you should let the doctor know if they occur.
To help prevent seizures, make sure your child:
- Takes medication(s) as prescribed
- Avoids triggers (such as fever and overtiredness)
- Sees the neurologist as recommended – about one to four times a year – even if responding well to medication
Keeping your child well fed and well rested and reducing unnecessary stress are all key factors that can help manage epilepsy. Common-sense precautions to take (based on how controlled the epilepsy is) include:
- Younger kids should always be supervised in the bathtub (a responsible adult should always be within arm's reach) and older kids should take showers with the bathroom door unlocked – and only when there is someone else in the house. (It's also wise to lower the temperature of hot water so a child cannot be accidentally scalded during a seizure.)
- Swimming or biking alone are not good ideas for kids with epilepsy (although they can certainly enjoy these activities with other people). A responsible adult within arm's reach is recommended during swimming for kids with epilepsy. A helmet is required during bicycling, as it is for everyone.
With these simple safety precautions, your child should be able to play, participate in sports or other activities, and generally do what other kids like to do. State driving laws vary, but teens with epilepsy will probably be able to drive with some restrictions, as long as the seizures are controlled.
It's important to make sure that other adults who care for your child – family members, babysitters, teachers, coaches, etc. – know that your child has epilepsy, understand the condition, and know what to do in the event of a seizure. Please talk to your neurology team as we work with caregivers to help you ensure that your child is getting care that is consistent with your treatment plan.
Offer your child plenty of support, discuss epilepsy openly, and answer questions honestly. Kids with epilepsy might be embarrassed about the seizures or worry about having one at school or with friends.
Unfortunately, many kids with epilepsy have other neurological problems. In particular, learning and behavioral problems are common and can create more hardship for a child than the epilepsy itself. In some cases, the medication's side effects can make these problems worse. When these services are needed, your child's treatment team will include some or all of the following:
- Occupational therapist
- Physical therapist
- Audiology and speech therapist
- Child Life specialist
- Social worker
Parents caring for a child with epilepsy also might benefit from the support of our specialists such as neuropsychologists, Child Life specialists, social workers, or specialized educators.
If your child has a more severe form of epilepsy, this help is critical. Our specialty team is very experienced in the challenges of epilepsy and can help you with coping skill now and with planning for the future (transition services) by identifying social, financial, and other community resources that will improve your child's well-being.
We're here to help.
If your child has been diagnosed, you probably have lots of questions. We can help. If you would like to schedule an appointment, refer a patient or speak to our staff, please call our offices at 682-885-2500.