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The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
I am a parent and new to the community.
Thu, 05/07/2020 - 14:04Topic: Share Your Story
My son has epilepsy. He had a big seizure in 2015 and 2016. He is now 21 yrs old, taking med regularly but still has aura 2, 3 times a month. I am looking for parents who have the same situation to guide me to cope with what I should do to help him prepare for his independence: driving is not an option, therefore his job...? Help please
Hi, Thank you for sharing
Submitted by Anonymous on Fri, 2020-05-08 - 09:10
Hi, Thank you for sharing your story and we understand your concerns. A key part of managing epilepsy is knowing how it can affect a person's independence and day-to-day needs. Visit our independent living pages here: https://www.epilepsy.com/living-epilepsy/independent-living to learn more about resources that are available & when help is needed. He may want to consider seeing a vocational rehabilitation counselor to help navigate his career and in many communities the local Epilepsy Foundation offers programs that can help people with epilepsy find jobs and resources to help connect you with vocational counselors: https://www.epilepsy.com/affiliates . Explore the employment section of our website, to help manage the impact of epilepsy on work, learn more about legal rights and reasonable accommodations: https://www.epilepsy.com/living-epilepsy/independent-living/employment-help-what-you-need-know. It’s important that your son is continuing to follow-up with his healthcare team and if he experiences any changes in seizure types/frequency, side effects, symptoms, moods or behaviors, to determine what individual treatment plan is best for him. It may be helpful for him to keep a journal or a diary, to help organize his health issues and track his seizures, which can be shared with members of his healthcare team. They can help identify or recognize any patterns, allowing himto modify (if needed) his treatment plan, behavior, or lifestyle appropriately. https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary . It’s common for those who are in caregiver role to feel overwhelmed. It’s also important to remember that you are not alone, and that you're taking care of yourself and making your health and overall well-being a priority. https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdf. Additionally, you may always 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 ,or contact your local Epilepsy Foundation.