Childhood Absence Epilepsy (FAQ)

Answers to questions families often have about caring for their child with childhood absence epilepsy

Childhood absence epilepsy (CAE) is a form of epilepsy that is characterized by absence seizures and, in 10% of cases, generalized tonic-clonic seizures. Absence seizures start between 4 and 10 years of age with the peak age at 6 to 7 years. Children may grow out of absence seizures.

Absence seizures are just one type of seizure. They are very short and often go unnoticed. With an absence seizure, your child may seem to be staring or not paying attention, and they will not respond to you. Seizures can happen many times a day.

CAE is usually related to a genetic abnormality and can be associated with other types of seizures. In general, seizures are caused by abnormal electrical impulses in the brain.

With absence seizures, it may not look like your child is having a seizure; it may look like they are daydreaming. It can be hard to tell that your child is having a seizure. Characteristics of an absence seizure are:

• The child stares, sometimes blinks, eyes may start to roll back, eyes flutter
• The seizure lasts 2-20 seconds, but usually less than 10 seconds
• The seizure abruptly interrupts activity (such as drinking from cup, playing)
• The child isn't aware of surroundings, such as being called by name
• The child has many a day, sometimes up to 100/day
• The child has no warning; the seizures start and end suddenly
• The seizures may include lip puckering or lip smacking

CAE is diagnosed by a doctor based on the description of the seizure and confirmed by findings on an electroencephalogram (EEG). An EEG looks for abnormal electrical discharges in the brain that may signal seizure activity. Absence seizures have a typical pattern on an EEG. If you think your child is having seizures, it is a good idea to take a video recording of a suspected absence seizure to show the doctor.

Most children with CAE stop having seizures in their teenage years; good signs that this may happen are an earlier age at onset and absence seizures as the only seizure type (no generalized tonic-clonic seizures). The risk of having another seizure after stopping medication is 16% after two years. About 10% of children with absence seizures will also have a grand-mal seizure.

For school-aged children with CAE, warning signs and treatment should be included in their health care plan at school, and staff should be trained accordingly. While some children with CAE may need a 504 plan (see 504 Plan), most will not need school services other than observation to make sure that absence seizures are not happening more than usual or affecting learning or self-confidence, and that parents are aware of any developing problems. People with CAE are able to live full lives.

Although CAE may be inherited, the genetics are complex and there may be no one else in the family with CAE. A family member has a slightly higher risk of having seizures of various types compared to someone in the general population.

Several medications are available to treat CAE (see Childhood Absence Epilepsy). A neurologist will often help guide treatment for this condition.

Children with CAE usually stop having seizures with medication, and medication can usually be stopped after two years of being seizure free. However, children with CAE have a higher risk than children in the general population of having learning, mood, and behavior disorders. These should be diagnosed and treated promptly.

You will need to pay attention and notice when your child is having a seizure. Family members and other people who are close to your child will need to be aware of seizure activity. They should know what to do when your child has a seizure, including how to respond and when to call emergency services (very rarely needed). Be aware that when your child has a seizure, you need to help them stay safe, such as by preventing falls and moving things out of the way. While seizures should be noticed, they will not affect the daily living of the child and family members.

Yes, a lot of families have noticed this. You might want to discuss sleep hygiene with your medical home doctor or neurologist to optimize sleep when he isn’t on sleepovers, and then work with your child and the family he would visit for the sleepover to see if you could work out a overnight visit with enough sleep.

Medications for absence seizures usually do not prevent generalized tonic-clonic seizures which can happen in children with absence epilepsy. You should let your medical home provider or neurologist, depending on your child’s seizure plan, know about the new seizure type and they might recommend starting another medication.

Fevers and illness in general tend to lower seizure threshold in children with epilepsy which can lead to a breakthrough seizure. Breakthrough seizures can be different from past seizures and should be discussed with your medical home doctor or neurologist who may recommend increasing the medication dose or changing the medication.