Community Forum Archive

Hi,Thank you for posting and we understand your concerns. Being away from home for the first time and managing epilepsy can be challenging. It’s important to remember that you are not alone, and we are here to help support you. We know this can feel overwhelming. However, there are anythings you can do to help your daughter manage her epilepsy and reduce these feelings. Epilepsy affects each person differently. As you all continue to plan for college, develop a personalized plan with her healthcare team, for managing her seizures and learning needs. Managing epilepsy can help to lessen risks, improve safety, and increase the chance of a successful college experience, both in and out of the classroom. https://www.epilepsy.com/learn/age-groups/youth/work-and-college/attending-collegeCreate a seizure response or action plan, which is a helpful tool for those close to her to understand what do if she has a seizure: https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms . Encourage her to use a journal or a diary for her to track her seizures, record medical history, manage medications, triggers and health events that may affect seizures and wellness, which can be shared with her healthcare team: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary . Learn seizure first aid to share with her and those who are around her at school and identify potential risks and safety tips, here: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe Review our seizure alert device factsheet with her doctor to see if a seizure alert device is an option her: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf  . For additional strategies and tips to help daughter as she transitions to college: https://www.epilepsy.com/article/2018/8/epilepsy-strategies-transitioning-college . Additionally, it’s important that she’s continuing to follow-up with her doctors on a regular basis and if she experiences any changes in seizure types/frequency side effects, symptoms, moods and behaviors. It can be helpful to connect with other parents who may have similar experiences, to ask questions, find & give support to each other,by visiting: https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents . Or contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, contactus@efa.org. epilepsy.com/helpline

Your concern is understood, as any parent would be when their child is going through anything out of the ordinary. My parents were facing the same when I went off to college - a two hour drive from home. Open communication, with the school administration, gave them insight about the seizures. Professors, too, were informed about them. As the school year progressed, the anxiety gradually diminished and a routine was established. Friendships developed, and we had fun (like any typical college student) staying up late and more.These friendships with fellow students, and prior knowledge they had related to seizures, enabled them to take action needed when necessary.If there is concern about disclosure, you may want to consider a medical ID. The discreet jewelry provides medics with the critical information they need, while also keeping you (as a parent) informed when circumstances arise.