What treatments are available for Juvenile Absence Epilepsy?
- JAE is primarily treated with anti-seizure medications, which your child's neurologist can recommend based on your child's specific needs. Some medications commonly prescribed for other types of epilepsy can make absence seizures worse, so it is important to discuss your child’s JAE diagnosis with their doctors.
What is the expected progression of Juvenile Absence Epilepsy?
- Many children with JAE respond well to anti-seizure medication and can lead full, active lives.
- Unlike some other childhood epilepsy syndromes that resolve over time, children with JAE often need to continue treatment long-term.
For questions specific to your child’s situation, Citizen Health offers a free doctor’s appointment preparation tool that incorporates your child’s medical records and provides appointment preparation suggestions through an AI chat interface.
Consulting specialists in other fields about a Juvenile Absence Epilepsy diagnosis
Most children with JAE are primarily managed by a pediatric neurologist or epileptologist. Depending on your child's individual needs, a neuropsychologist may also be helpful, particularly to assess and support any impacts on learning, attention, or daily functioning. Your child’s provider can help determine whether additional perspectives may be helpful.
Finding clinical trial opportunities & supporting research into Juvenile Absence Epilepsy
Families often want to know how they can stay informed about research related to JAE. 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. Participation is entirely optional, and many families simply want to keep an eye on what opportunities exist.
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Citizen Health is tracking research about epilepsy. If you are interested in personalized alerts about research studies, you can sign up to join the Citizen Health community.
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 Juvenile Absence Epilepsy. 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. Through the Citizen Health platform, families can also contribute to this kind of research by sharing the health data from their child's regular care, no extra appointments needed.
Patient registries collect health information from individuals with epilepsy to advance research and connect families with trials. Joining a registry signals to researchers and drug companies that families are engaged and ready to help, which can attract more funding and research attention. Patient Advocacy Groups typically establish and maintain patient registries for specific rare diseases. (See Section 5 below to learn more).
Organizing and maintaining your child’s medical records for Juvenile Absence Epilepsy
Rare disease patients see many different doctors, often across different medical and technological systems that may not talk to each other. Unfortunately, that means the burden often falls on caregivers to track care holistically, identify “gaps,” and make sure nothing gets missed. 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.
Many caregivers establish one (or several) records binder(s) in which they keep track of appointments, medication updates, symptoms, and other ongoing medically relevant information.
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?”)
As a company built by rare disease caregivers, we aim to overcome the need for physical records binders. But ultimately the important question is what works for you and your family.
