Dealing with a diagnosis of epilepsy: Common questions from parents

Illustration of brain with epilepsy

A diagnosis of epilepsy can seem overwhelming: You likely have a lot of questions about how seizures — and their treatment — will affect your child’s life and what that might mean for your family. That’s why education is crucial for helping ensure that you understand as much as possible about the condition. Events such as the Fifth Annual Epilepsy Awareness Day at Disneyland are wonderful opportunities to learn from experts and from other families. Here, Dr. Arnold Sansevere of the Epilepsy Center at Boston Children’s Hospital answers five common questions from parents and kids.

What causes seizures?

A. Seizures result from abnormal electrical activity in the brain: Some parts of the brain get over-excited and fire off too many electrical signals. Common causes include an abnormality in brain development and underlying genetic causes, in addition to past infections or brain injury. In many cases, we don’t know the cause of a child’s seizures. When children go on to have multiple seizures, the disorder is referred to as epilepsy.

Epilepsy can involve many different types of seizures: Some are easy to recognize, as when your child’s body shakes and they become temporarily less aware. Other seizures have subtle outward signs such as altered consciousness, staring and eyelid fluttering. Epilepsy sometimes can be associated with and put children at risk of behavior problems, ADD/ADHD, learning difficulties, depression and anxiety. Some doctors are starting to use the term “epilepsy spectrum disorder” to reflect how complex epilepsy can be.

What should I do if my child has more than one seizure?

A. Many conditions other than epilepsy — such as stroke, fainting, problems with heartbeat or breath-holding spells — can cause symptoms that sometimes look like seizures. To confirm that a child has epilepsy and to better understand it, physicians may order tests such as an electroencephalogram (EEG), brain imaging and blood tests. “Your child may have epilepsy if they have had two or more unprovoked seizures, meaning there is no detectable immediate cause of the seizures, such as a high fever,” explains Dr. Sansevere.

Will my child outgrow seizures?

A. Since children’s brains are still growing and developing, seizure activity changes as they grow up. It is possible for kids to stop having seizures as they get older — some research suggests that up to 70 percent of children with idiopathic epilepsy (epilepsy with no know cause) will achieve remission as adults. However, it’s difficult for doctors to predict who will experience remission and who won’t.

Is medication the only treatment for epilepsy?

A. No. Although about two-thirds of children with epilepsy are able to get their seizures under control with anticonvulsant medications, some kids may respond better to other treatment strategies. About 30 percent of children with epilepsy benefit from the ketogenic diet, a specialized eating plan that’s high in fat and low in carbohydrates. The ketogenic diet can control seizures as well as medication in some children, but it is challenging to follow and can have side effects. For children who aren’t helped by medication or diet therapy, surgery or noninvasive brain stimulation may be an option.

Can seizures be fatal?

A. Seizures themselves aren’t typically fatal but children with epilespy are at risk of injuring themselves during seizures and, in some cases, can die from seizures. The most common disease-related cause of death in epilepsy is sudden unexplained death in epilepsy (SUDEP). This phenomenon is much more common in adults than in children, and in people whose seizures are not well controlled. In SUDEP, the child usually dies in their sleep and no identifiable cause of death can be found. Researchers continue to investigate the factors involved in this rare problem. The best way to prevent SUDEP is to be sure seizures are treated. It’s important to have a conversation with your physician about SUDEP once the diagnosis of seizures and epilepsy are made.

Register for the Fifth Annual Epilepsy Awareness Day at Disneyland, a free event that runs from November 6-8, 2017.