Feature article: Heading off to college: Tips and advice for college kids living with epilepsy.
In this issue, we are going to share some useful tips to help students leaving home to begin their college years. There are also wonderful resources at the end of the article.
Some parents, teachers, or even kids themselves may wonder if it is possible to go to college away from home when living with epilepsy. There may be concerns about sleep deprivation, seizures occurring in unfamiliar places, forgetting to take medications, and more.
The answer is that there are plenty of young people living with epilepsy that can pursue a higher education which may include living in a dorm, on a campus away from the family home. In fact, if there is the desire and potential and it is possible to support the young person in this pursuit, every effort should be made to help them move in this direction (read “A mind unraveled” by Kurt Eichenwald to read a testimonial of college years with epilepsy). https://epilepsygroup.com/news_patients_providers6-20-2-364/epilepsy-book-club.htm).
However, it is important to keep in mind that a young person’s experience may be a bit different than if epilepsy were not part of the equation. A focus on health and safety is paramount to facilitate the youth’s college experience and here are some important bits of advice.
What to do before even getting to school?
Meet with your epileptologist and discuss any concerns that you or your family may have. Most epileptologists who work with young patients have been asked a lot about this important step in life and may have some useful recommendations to offer based on their experience.
Next, make sure to refill your next month of medication before leaving so that this will not be an issue on the first month of school. If moving to a new state, figure out who will prescribe the medication from now on (if your doctor does not have a license in your new state of residence). Also, figure out what pharmacy you will be using or if you might need a mail-order pharmacy. Also, set up a follow-up appointment with your doctor for when you come back on break and figure out if you might still be able to reach out to her/his office during the year if needed. If you find that you could really use having a local epilepsy doctor near your school, your current doctor may be able to recommend a colleague and will be able to discuss your case (and share records) when you start your treatment there.
Think about your health insurance including making sure that you remain on your parents’ insurance or have access to a school-based health insurance.
Schools typically have a campus health center where you can be seen by a health professional, may be able to get prescription refills, etc. Make sure to find out about this center and register with them if necessary. Depending on the specifics of your epilepsy and your individual needs, you may also want to contact the school’s Students with Disabilities Office and find out how they can support you if needed. Under the Americans with Disabilities Act, students with epilepsy can request accommodations from the college that might include: extended time and flexibility with deadlines for assignments, recording lectures if you are absent due to seizures (or have a notetaker assigned to you who will share the class notes), taking exams in the afternoon if you usually have seizures in the morning or being permitted to take them on another day if you had a seizure and have not returned to baseline.
Come prepared with a Seizure Action Plan that you can share with any key members of the campus community. Usually, you develop this Action Plan with your medical doctor. It includes descriptions of your seizures, instructions for others on how to respond if you have a seizure, how to keep you safe, it may include the name and contact information of a relative or friend and will mention your medication regimen. For more information on this, go here: https://seizureactionplans.org/
As soon as you arrive at school and meet your roommates, especially if you are going to be sharing a room, you may want to inform one of the roommates (or all depending on the specifics of your living arrangements) about your epilepsy. You will be sharing your seizure action plan with your roommate to make sure she/he knows what to do and is not caught off guard. You may also want to let security staff know since they may be called in if you have a seizure in public and it is best they understand that this is a medical condition and how to best respond.
As you settle into school, there may be other students or staff that you decide to let know about your epilepsy.
Please note that some schools have set aside certain rooms for students who have specific health issues, some of these are single rooms or in more accessible locations. You may want to explore this option depending on your needs and the campus layout.
Last tips to make sure you remain healthy and have a positive experience at college or university: Make sure you exercise, sleep enough, pace yourself with how many courses you take and how many extracurricular activities you engage in, avoid alcohol and using certain recreational drugs.
And you can find many additional and excellent resources produced by Epilepsy Alliance America here: https://www.youtube.com/playlist?list=PLlctTDTZD0rofuIFo4hweN0jFM7r5swQa
