When Your Teen Keeps Having Seizures: A Guide for Parents
The first time you watch your child have a tonic-clonic seizure, time seems to stop. When seizures keep happening through the teenage years, the worry becomes daily: at school, at sleepovers, behind the wheel of a friend's car. This guide focuses on what you can actually do.
Key takeaways
The teen years bring specific seizure triggers: short sleep, irregular routines, missed doses and, for some, alcohol.
Every caregiver and school contact should know basic seizure first aid and when to call 911.
Gradually handing medicine responsibility to your teen works better than an abrupt switch.
The X-ACKT study is open to people aged 12 and older with primary generalized tonic-clonic seizures. Parents give permission and teens give their own agreement.
Why the teen years can be harder
Several generalized epilepsies, including juvenile myoclonic epilepsy, commonly begin in adolescence. At the same time, teenage life works against seizure control:
Sleep: late nights, early school starts and weekend catch-up sleep are a classic trigger combination.
Missed doses: busy schedules and a wish to feel "normal" in front of friends lead to skipped medicine.
Growth and hormones: body changes can affect how medicines work, and some teens notice seizures linked to their menstrual cycle.
Alcohol and substances: these can trigger seizures and interact with medicine.
A shared seizure diary helps you and your teen spot which of these matters most.
Seizure first aid everyone around your teen should know
The CDC's first aid steps are simple enough to teach friends, coaches and grandparents:
Stay calm and stay with them. Time the seizure.
Keep them safe. Move hard or sharp objects away and cushion the head.
Turn them gently onto their side, mouth pointing toward the ground, to keep the airway clear.
Do not hold them down, put anything in their mouth or give food or water until fully alert.
Stay until they recover and help them rest somewhere safe.
Call 911 if
The seizure lasts longer than 5 minutes, another follows soon after, they have trouble breathing or waking, they are injured, it happens in water, or it is their first seizure.
Working with school
Ask your teen's neurologist to help you write a seizure action plan: what their seizures look like, what to do, when to give rescue medicine and when to call 911. Share it with the school nurse, teachers and coaches, and ask how staff are trained. Many schools have their own forms, so check early in the year.
Handing over responsibility, step by step
By adulthood your teen will manage their own epilepsy, so it helps to start now. Many families move in stages: first the teen fills the pill organizer with a parent checking, then the teen sets phone reminders, then the teen speaks first at appointments. Let them ask their own questions. A teen who understands why sleep and doses matter is more likely to stick with both.
When seizures continue despite treatment
If your teen has tried two or more medicines and still has seizures, ask whether the seizure type has been confirmed with video-EEG and whether a referral to a comprehensive epilepsy center makes sense. It is worth knowing that focal seizures can spread and look generalized. Here is how to tell the difference.
Your teen is 12 or older and tonic-clonic seizures continue? See if the X-ACKT study may fit.
A research study open to teens aged 12 and up
The X-ACKT study (NCT05667142) is testing XEN1101 (azetukalner), an investigational once-daily capsule, added to current seizure medicines in people aged 12 and older with generalized epilepsy and primary generalized tonic-clonic seizures. Participants need to have had these seizures for at least a year, have tried at least two seizure medicines and currently take 1 to 3. Some participants receive placebo.
Study snapshot: two Phase 3 epilepsy studies
What is being studied
XEN1101 (azetukalner), an investigational once-daily capsule taken with the evening meal. It is designed to act on Kv7 potassium channels, which help calm overactive electrical signals in brain cells.
How it is tested
Added to a person's current seizure medicines and compared with placebo in a randomized, double-blind design. A baseline period of up to about 9.5 weeks is followed by 12 weeks of blinded treatment.
X-ACKT (NCT05667142)
People aged 12 and older with generalized epilepsy who have primary generalized tonic-clonic seizures, have tried at least two seizure medicines, and currently take 1 to 3.
X-TOLE3 (NCT05716100)
Adults aged 18 and older with focal epilepsy diagnosed at least two years ago, who have tried at least two seizure medicines and currently take 1 to 3.
After the blinded period
People who complete the 12 weeks may be able to join a separate open-label extension study, where everyone receives XEN1101.
Where
X-ACKT has dozens of research sites across the U.S., including epilepsy centers in Boston, Philadelphia, Atlanta, Houston, Cleveland, Seattle and Los Angeles. The study team can tell you the nearest site for either study.
How consent works for teens
For participants under 18, a parent or legal guardian gives permission (often called consent), and the teen gives their own assent, meaning they agree after the study is explained in terms they understand. If your teen does not want to take part, their wishes are taken seriously. Either of you can ask questions at any stage, and participation can stop at any time.
Questions worth asking the study team
How often are visits, and can any fit around the school day?
What happens with our regular neurologist during the study?
How is the seizure diary kept, and who can help fill it in?
What happens after the 12-week blinded period?
Never stop seizure medicine on your own
Stopping or changing antiseizure medicine suddenly can trigger severe seizures, including status epilepticus. Make any change only with your neurologist.
Frequently asked questions
Why do seizures often get worse in the teenage years?
Common teen factors include short or irregular sleep, missed doses, hormonal changes and alcohol. Some generalized epilepsies, such as juvenile myoclonic epilepsy, also commonly begin in adolescence.
What should I do if my teen has a seizure?
Stay with them, time the seizure, keep them safe, turn them onto their side and do not put anything in their mouth. Call 911 if it lasts longer than 5 minutes or other warning signs appear.
Can a 12-year-old join an epilepsy clinical trial?
Some trials include adolescents. The X-ACKT study is open to people aged 12 and older with primary generalized tonic-clonic seizures who meet its other criteria.
What is assent in a clinical trial?
Assent is a minor's own agreement to take part after the study has been explained in an age-appropriate way. It is given in addition to a parent's or guardian's permission.