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OUR MISSION

"The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives."

 

Epilepsy Strategies: Transitioning to College

The transition to college is a major milestone for teens and families. The college journey allows a teen to gain new social independence, learning opportunities and personal responsibilities. For some parents, adjusting to this time of separation and transition can be difficult.

For a teen living with epilepsy, heading off to college may bring new concerns. Epilepsy affects each person differently. As you plan for college, develop a personalized plan for managing your seizures and your learning needs. Planning ahead can help to lessen your risks, improve safety, and increase the chance of a successful college experience both in and out of the classroom.

Where to Begin?

Begin planning at home with your family and your current epilepsy care providers. Talk with your parents and epilepsy team about your goals and expectations for the year ahead. Also, share any of your concerns around how you will manage your seizuresindependently. Talking about how your epilepsy might affect your college experience and ways to address this will make a successful transition more likely.

Family

Set expectations with your parents for times to check in. This can be a time to let them know you are doing well and share any new problems. Review your seizure control. Take time to consider if changes to your medication or class schedule might be needed. Remember, this is a big change for parents too! It will take time for them to adjust to your independence and your ability to manage your health on your own.

Emergency contacts should be set up. Decide who you want to share your emergency contact list with and when emergency contacts should be called.

    Who will you provide this contact information to? Some options include the dorm resident advisor (RA), your roommate, or a close friend at school.

    Will your family have a contact person on campus they can check in with if they have trouble reaching you?

    Talk with your family about these practical needs and what will work best for everyone involved.

    Health care needs including medications, scheduling appointments, and lab tests should be reviewed together with your family. Chances are your parents have helped schedule appointments and made sure you have the medication you need.

      How will you manage these while away at school?

      How much support will you need from family to do these things?

      Are you ready to take on these responsibilities right away or do you need some time to gradually transition these responsibilities?

Your Epilepsy Team

Talk with your epilepsy doctor and nurse.

Develop or revise your Seizure Response Plan. Ideally you've already met with them and developed a plan for what to do if you have a seizure or change in seizure pattern. This plan should also include what to do if you have an emergency, seizures that last too long or happen too close together, or if you get injured or sick after a seizure.

Make a plan on how to handle medicine refills, visits with your doctor or nurse, and getting follow-up blood tests if needed.

    Get your medicines refilled before you head off to college. The most common reason for breakthrough seizures is missed medications. Always be prepared so you don't run out of your medicine.

    Find a pharmacy close to your school to refill medicines more easily. Or check with your insurance plan for a mail-order pharmacy.

    Speak with your epilepsy doctor about follow-up visits while you attend college. If you can, book appointments around school break and holiday times when you will be returning home.

    Your epilepsy doctor and nurse are rooting for your success. Most people develop a good working relationship with their providers and find comfort in knowing they will be there to help.

    Ask your epilepsy team how to reach them. Should you use a patient portal where you can email them? Do they prefer you call and leave a message?

    If you are traveling to a school far away (across the country or out of the country) from where you get your epilepsy care, your doctor may refer you to a neurologist closer to the school. Ask your current doctor for their recommendations and set up an appointment to meet your new neurologist. Get a letter from your current epilepsy team that includes a summary of your diagnosis and medical care to give to your new neurologist.

Use Available Campus Support

Campus Orientation: Many schools offer summer orientation tours and transition workshops. If you didn't take a general tour, contact the school and set up a visit before starting school. During this time, ask questions about transportation, local health services on and off campus, nearest pharmacy for medication refills, and other support and learning services (for example study groups, tutoring, etc.) on campus you may wish to consider.

College Health Center: Contact the college health center before school starts. Let them know about your epilepsy, other health needs, and what help you might need on campus.

    Give them any written notes from your epilepsy team. Share your seizure response plan that outlines your epilepsy diagnosis, type of seizures, current medications, and what to do for typical first aid and if an emergency happens.

    Check your insurance coverage while away at school. Will school health insurance cover your epilepsy or will you need your own insurance (or continue on a family plan?

    Whether you plan to stay on your parents' health plan or enroll in a college plan, know your coverage to limit any surprise costs or challenges you may face trying to make appointments for follow up visits.

Student Disability Office: This campus office may be helpful to you during your studies. Not everyone with epilepsy will have or want to connect with this office, but it is good to know in advance how the counselors at this office can help with any epilepsy and learning problems. This office can help you get the right accommodations if they are needed to maximize your learning and success.

Student Advisors: Student advisors or mentors are often available through college programs. Try to find the advisor who is the right fit for you. This means someone you are comfortable speaking with about your studies, and if you choose to, also talking about your epilepsy and how it might impact your learning. Your advisor can be an advocate for you and can offer you their best advice based on their experience with other students. It is always good to have a trusted listener to turn to for help.

General Tips for Success on Campus

College is a time of great personal growth, learning and fun! It is also normal to expect some stress as you will be in a new place, with new people, facing new challenges, and building new relationships. Think ahead about how to cope with some of these stressors. Remember to take care of your emotional health as well as your physical well-being. If you ever feel overwhelmed and too stressed out, review these tips on stress management.

Some other tips to remember:

Eat well. Proper nutrition will give you the energy to get through your busy days. If you have special dietary needs or are on an special diet for your seizures, speak with the cafeteria staff and school health nurse. You'll need a plan to get a good variety of choices for meals and snacks while you are at school.

Sleep well. Getting proper rest is important for decreasing your risk for breakthrough seizures. Make sure you have enough sleep each night — this also improves your ability to learn. Your brain and your body need rest to function well. If you have special requirements around sleep, be proactive and plan your class schedule to help you meet those needs. For example, you may do better taking classes class later in the day to ensure you have had enough sleep or if you typically have seizures in the early morning hours. In some cases, you may need to limit evening activities on nights where you have an early class the next day. Also speak with your roommate about your sleep needs so you both are on the same page.

Schedule routines for taking your medication on time. Use a pill box and reminder alarms on your phone or watch so you take medication regularly and reliably. Missed doses of medication are a common cause for breakthrough seizures. Phone text message reminders for taking medications are available by using Texting 4 Control.

    Manage time well. Use online or handwritten calendar organizers. These can help you get through your days, stay on schedule for assignments, and plan ahead for study time.

    If you have memory or learning problems related to your seizure medicine, using a planner or organizer is vital.

    If you are having trouble managing time, ask for help! Your student advisor and the student disability office can be good supports for finding ways to organize your time.

Exercise your body. Whether it is taking a walk, shooting some hoops or heading to a yoga class, exercise will benefit you. It's a good way to re-energize and improve your focus. Taking a little time each day to exercise is important for your general health and emotional well being. Exercise can help you decrease stress as well as build your muscle strength and endurance.

Relax your brain. Another way to lessen stress is to give yourself some relaxing time away from studying. Some people may find listening to music or watching a movie helps them relax. Others enjoy getting together with friends to take a break. Build in a little down time each day and do something that helps you relax.

Avoid risky behaviors. The use of alcohol and illicit drugs on college campuses presents a challenge for all students. Have an open and honest talk with your epilepsy doctors and your parents to come up with ways to avoid these health risks.

Seizure first aid information can be shared in your dorm. Ask your dorm RA to post information on seizure first aid in a public area (for example, the dorm kitchen, bulletin board, hallyway, etc.). It is helpful for everyone to know what to do in the case of a seizure and when to call 911 for help. Not all seizures require emergency help.

Embrace the experience of college. Every student heading off to college has some reservations and insecurity around what to expect. Know you are not alone if you are feeling nervous. Be open to new friends and new experience. Know that your supports back home will always be available if you need them. You can do this!

Other Considerations

Tuition

College costs are a challenge for most students. Students and families use many different methods to help pay for college including scholarships, part time jobs and student loans. There are several scholarships available for students with epilepsy who are heading to college, including those provided by a local Epilepsy Foundation and pharmaceutical companies. Find information about scholarships for people with epilepsy. Or call your local Epilepsy Foundation or the 24/7 Helpline at 1-800-332-1000.

Other important resources for students heading to college include:

HEATH Resource Center at the National Youth Transitions Center provides information on post-secondary education for students with disabilities, including information on financial aid resources.

Federal Student Aid Information Center

    Contact them at 1-800-433-3243

Sharing Your Experience And Finding Help

Sharing your college experience as a student living with epilepsy can help you and others as well. There are many options for sharing your experience and finding peer support. Local Epilepsy Foundations may have in-person or online support groups. Groups offer chances to meet other students living with epilepsy and share challenges and advice.

More ways to get connected:

Visit our community forums and online chat room.

Online sessions via Facebook Live or webinars are available too.

Your College Journey

Approximately 18 million students will enroll in college programs in the United States each year. Each person attending college is different. Some students attend 2-year colleges, others attend 4-year colleges. Some students do all their learning in a classroom while others do theirs online. Some students attend classes year-round, others take a semester off to travel or to deal with a health or family issue. There is no single “right” way to do college. Your college journey will be as unique as you are.

Managing your epilepsy as you expand your education and follow your dreams is possible. Remember to take time to:

Plan ahead for success

Be flexible in how and when you learn to reach your goals

Use personal and academic supports on campus and back home as needed

Take care of your physical and emotional health

Celebrate your accomplishments

Authored by: Elaine Kiriakopoulos MD MSc on 8/2018
Reviewed by: Joseph I Sirven MD on 8/2018