Childhood Absence Epilepsy

Introduction

The Questions and Answers that follow aim to provide an introduction to childhood absence epilepsy (CAE) for parents and other family members. Following those, we offer links to selected resources for more information and support and a list of valuable services.
More information about many topics relevant to children with CAE and many other chronic conditions and their families can be found in the left menu. Detailed information aimed at primary care doctors can be found in our Childhood Absence Epilepsy module.

What is 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.

How do you get CAE?

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.

What are the symptoms?

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

How is it diagnosed?

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.

What is the expected outcome?

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 Section 504 of the Rehabilitation Act), 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.

Will anyone else in the family get CAE?

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.

What is the treatment?

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.

How will my family’s life be changed?

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.

My child wants to go to sleepovers with friends, but does not sleep well and has more absence seizures the next day, despite medication. Is this common?

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.

My child has been seizure-free for over a year, then had a generalized tonic-clonic seizure. She is on medication and her blood level was good shortly before the seizure. Why did this happen?

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.

Every time my child gets a fever she seems to have more seizures. Why?

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.

Resources

Information & Support

For Parents and Patients

Childhood Absence Epilepsy (Epilepsy Foundation)
National organization with local chapters that provides information and support.

Services for Patients & Families in Rhode Island (RI)

For services not listed above, browse our Services categories or search our database.

* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.

Authors & Reviewers

Last update/revision: June 2019
Current Authors and Reviewers:
Author: Lynne M. Kerr, MD, PhD
Reviewer: Jodi Hansen
Funding: The Medical Home Portal thanks the 2011-2012 URLEND Medical Home Portal trainees group for their contribution to this page.
Authoring history
2015: revision: Denise Morita, MDR
2012: first version: URLEND Trainees, 2011-2012CA
AAuthor; CAContributing Author; SASenior Author; RReviewer