Moving from Pediatric to Adult Neurology
Why This Transition Matters
As teens with epilepsy become adults, medical care changes. Adult epilepsy care focuses on independence, long-term planning, and adult-specific issues such as driving, work, college, pregnancy, and mental health. Planning ahead helps prevent gaps in care and missed medications.
When to Start
Begin conversations during your mid to late teens about transition of care. Ask your pediatric neurologist: “Can we start planning my transition to adult epilepsy care?”
Finding an Adult Epilepsy Specialist
Your pediatric epilepsy team can often recommend adult specialists directly. This should be your first point of contact to discuss the transition from Pediatric to Adult medical care. Other trusted resources include the Epilepsy Foundation, the National Association of Epilepsy Centers, and the American Epilepsy Society.
Prepare an Epilepsy Medical Summary
Your pediatric care team should facilitate your transfer of medical records to your adult care team. However, it can also be helpful to keep your own summary of your medical condition including the following items:
- Epilepsy diagnosis or syndrome (if known)
- Seizure types and frequency
- Current medications (names, doses, schedule)
- Past medications and why they were stopped
- EEG and MRI reports
- History of status epilepticus
- Rescue medication plan
- Genetic testing results (if applicable)
- Emergency contact information
Skills to Practice Before Adult Care
You may have been relying on a parent or caregiver to help you manage your epilepsy but now is the time to take on increased responsibility for your health. Independence can be both exciting and scary. Part of your success will be supported by learning new skills before you are on your own.
- Name medications and doses
- Refill prescriptions independently
- Recognize seizure triggers
- Know when to seek urgent or emergency care
- Understand safety issues (sleep, alcohol, driving)
- Develop or update your seizure action plan
- Speak directly with healthcare providers
Adult Epilepsy Topics to Discuss
Becoming an adult also means facing new challenges that you may not have considered as a child. As your life becomes more independent, your healthcare decisions, responsibilities, and risks may also change. Talking openly with your healthcare team about these topics can help you make informed decisions, stay safe, and better manage epilepsy as you navigate adulthood.
- Medication changes in adulthood
- Driving laws (vary by state)
- Mental health and cognition
- Work or college accommodations
- Women’s health (contraception, pregnancy planning)
- SUDEP education
First Adult Neurology Visit Checklist
Your first visit with an adult neurologist is an important step in managing your epilepsy independently. Preparing ahead of time can help make the appointment more productive and ensure your new care team has the information they need to support you. Bringing a few key items will make it easier to review your history, medications, and any questions you may have.
- Epilepsy medical summary
- Medication list
- Insurance card
- Pharmacy information
- Written questions
Key Message: A successful transition is planned—not rushed. Start early, stay organized, and use epilepsy-specific resources to ensure continuity of care.
Resources
National Association of Epilepsy Centers
Find a doctor
You can enter a state, or city and then you will get a list of physicians and their specialty. Alternatively, you could enter the State and/or City and then “Specialty” from a dropdown list to refine your search.
Young Adults with Epilepsy
A resource created by young adults with epilepsy FOR young adults with epilepsy.
Phil Haydon, Ph.D., is an Emeritus Professor of Neuroscience at Tufts University School of Medicine. His research helped reveal how non-neuronal brain cells contribute to sleep regulation and play important roles in neurological disorders including epilepsy. His scientific work has led to the formation of several biotechnology companies, including GliaCure and Naveris. Beyond the laboratory, Phil is an accomplished offshore sailor and in 2024 won the double-handed division of the Newport–Bermuda Race.
Never heard of such a thing when I was dropped by my paediatric epilepsy doctor. Totally left with no directions and as far as I know my parents were not either. Bye bye, good luck and figure your rest if your life on your own was what it felt like.