What symptoms should we monitor for Childhood Absence Epilepsy?
- CAE typically begins between the ages of four and ten, often with frequent, very brief absence seizures lasting a few seconds. During a seizure, a child may suddenly stop what they’re doing, stare, or pause mid‑sentence, sometimes with subtle eyelid fluttering or small repetitive movements, and then quickly return to normal without confusion. Because these episodes are short and can occur many times a day, they are easily mistaken for daydreaming or inattention.
- Most children with CAE have otherwise typical development, though some may experience attention or learning challenges that deserve support.
What is the expected progression of Childhood Absence Epilepsy?
- The prognosis for CAE is generally excellent. With treatment, many children achieve good seizure control, and a large number outgrow their seizures in adolescence. Your child’s neurologist will tailor the care plan based on your child’s seizure pattern and overall needs.
What treatments are available for Childhood Absence Epilepsy?
- CAE is treated with anti-seizure medications, which your provider can speak to in more detail. One important thing to know: some seizure medications that are commonly prescribed for other types of epilepsy can actually make absence seizures worse. Whenever any provider prescribes your child a new medication, it’s a good idea to make sure they’re aware of a CAE diagnosis.
- If the first medication tried doesn't fully control your child's seizures, other options are available, and combinations of medications can be explored. Finding the right medication and dose can take some adjustment, but good seizure control is achievable for many children with CAE.
Consulting specialists in other fields about Childhood Absence Epilepsy diagnosis
While a neurologist typically manages CAE, families may consult other specialists based on their child’s needs. For example, a neuropsychologist may evaluate skills like attention, learning, or memory when questions arise at school or at home. Not every child needs this kind of evaluation, but some families find it informative. Your child’s main provider can help determine whether additional perspectives may be helpful based on what they observe over time.
Finding clinical trial opportunities & supporting research into Childhood Absence Epilepsy
Families often want to know how they can stay informed about research related to CAE. Research comes in many forms, ranging from studies that collect information about children’s development (sometimes called “natural history” studies) to clinical trials that look at new approaches to care.
Clinical trials are research studies that help doctors find new treatments. Some trials test new medicines or therapies that aren't available yet. Even if you may choose not to participate, it can be good to know what options exist for CAE. Your child's doctor or disease organization can help you find trials that might be a good fit. The U.S. government also maintains a registry at clinicaltrials.gov
Natural history studies are designed to help researchers learn more about the condition. This information is important for creating future treatments. Traditional natural history studies can involve additional medical appointments over the course of several years
Natural history studies do not test medications; they usually involve sharing medical records, completing questionnaires, and occasionally attending clinical visits. Participation does not affect eligibility for future treatment trials. Your real-world experiences could contribute to critical natural history studies, enabling researchers to better understand CAE, uncover patterns, and accelerate progress toward breakthroughs.
Families who join Citizen Health and choose to share their child’s health information may receive alerts about research opportunities that could be relevant based on their child’s diagnosis and medical records.
Sign up to join the Citizen Health epilepsy community and learn how to participate: Your AI Advocate | Helping patients & caregivers navigate health records and appointments
Patient registries collect health information from people with epilepsy to help research move faster and connect families with clinical trials. Registries also show researchers and drug companies that families are engaged and want to help develop new treatments, which can bring more funding and research attention to a disease. Some diseases have more than one registry you can join. Patient Advocacy Groups typically establish and maintain patient registries for specific disorders. (See Section 5 below to learn more).
Organizing and maintaining your child’s medical records for Childhood Absence Epilepsy
Keeping your records as organized and centralized as you can from early on is likely to improve your ability to manage your child’s care down the road.
You can start by creating a one-page sheet with your child's diagnosis, current medications, allergies, and emergency contacts. Bring this sheet to every appointment. It can really help in emergencies or when you see a new doctor.
We also encourage caregivers to consider Citizen Health’s free tools for centralizing, managing, accessing, and extracting key information from health records. Our system will collect all your health records, across doctors and health systems, making them available on our secure online platform that can provide answers in real time based on questions you ask (like “What medications has my child been prescribed in the past year?” or “When did we last see an orthopedist?”)
