Patient Education
Teens becoming adults
Sometime in the teen years, epilepsy care starts moving from a children's neurologist to an adult one. Planning that move early — instead of scrambling at 18 — makes it much smoother. These roadmaps from the American Epilepsy Society show what to work on at each age, whether your teen is headed toward full independence or will continue to need a caregiver's support.
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Young people with epilepsy don't stay in pediatric care forever. At some point — usually around age 18 — care moves from a children's neurologist to an adult neurologist. Doctors call this "transition," and it works best when it is a gradual process that starts in the early teen years, not a single handoff on an 18th birthday.
Why does this matter? Adult clinics work differently than children's clinics. Adult doctors expect the patient — not the parent — to know their medications, describe their seizures, and speak up during visits. There are also new grown-up topics on the table: driving laws, college and jobs, alcohol, pregnancy and birth control (some anti-seizure medications need adjusting for these), and insurance coverage. A good transition plan builds these skills and conversations in step by step, year by year.
The American Epilepsy Society (AES) publishes two roadmaps for this journey, and it is important to pick the right one. The first is for teens who are expected to become independent adults — it focuses on gradually shifting responsibility to the young person: managing their own medications, learning their medical history, spending part of clinic visits alone with the doctor, and planning for driving, college, and work. The second is for young people with significant developmental disability, where full independence is unlikely — it keeps caregivers at the center and adds planning topics like guardianship or medical power of attorney, living arrangements (group home, family, or supported living), applying for SSI, and finding adult doctors who can handle specialized needs.
Both roadmaps are organized by age, starting around 12–13 and running past 18, so you can see what your family should be discussing now and what comes next. The AES notes that the ages are flexible — the pace depends on each young person's maturity, and for those with severe disability, the actual switch to an adult neurologist can sometimes be delayed if the family and doctors agree and insurance allows.
These handouts can't replace a conversation with your neurology team, but they are a great way to start one. Bring the roadmap that fits your family to your next appointment and ask where you are on the timeline — and if your teen is 16 or older and no adult neurologist has been named yet, that is a good question to raise soon.
The materials
Everything below is free. These summaries are for general education — always talk with your own care team about what applies to you.
- Transition roadmap: teens on a path to independence (AES)An age-by-age chart (12–13 through 18+) from the American Epilepsy Society for teens without significant developmental disability who are expected to manage their epilepsy on their own as adults. It maps out when to start self-managing medications, learning your own medical history, talking with the doctor about safety and SUDEP (sudden unexpected death in epilepsy — a rare risk care teams bring up because some risks can be reduced), planning for driving and college, having time alone with the doctor, and choosing an adult neurologist.
- Transition roadmap: when independence is unlikely (AES)The companion age-by-age chart from the American Epilepsy Society for young people with significant developmental disability who will continue to need caregiver support as adults. It covers the caregiver-centered version of transition: guardianship or medical power of attorney, living arrangements, SSI and insurance, IEPs and vocational planning, and finding adult providers for specialized needs — including the option of delaying transition when appropriate.