This post is part of the Epilepsy Blog Relay™.
This blog post was submitted by Eisai, the Presenting Sponsor of the November 2019 Epilepsy Blog Relay.
Carole’s Story
As a parent of two young adults with epilepsy, I understand the challenges – both emotional and physical – that come with caring for young people with this complex condition. My daughter began having seizures as a young child and was seizure free for 15 years before being diagnosed with another form of epilepsy in early adulthood. Helping her navigate the medical system from the sidelines, was a very different experience than being the primary caretaker for my son who was diagnosed with epilepsy when he was in high school and still living at home. Still, the roles of parent and caregiver feel inherently connected to me, and I know just how challenging it can be to let go as your children begin to take a leading role in managing their own care.
My son and I needed to learn how best to work together to manage this new development while enabling him to live like a teenager. I had to remind my son – who barely took vitamins – to take anti-epileptic medication every day, to get enough sleep, and to avoid anything that could trigger a seizure. But while I was running point, I was aware that soon he would need to learn to handle his epilepsy independent of my day-to-day management. His pending adulthood meant that my son needed to learn how to care for himself, and just as importantly, I needed to learn how to let go. Any mother can tell you that it is a difficult thing to do, but what made it possible was arming myself and my child with the right information and finding the right people to rely on throughout the journey.
Opening up and Preparing for College
When he was first diagnosed, my son was private about his diagnosis. He didn’t want to be different, and, like many teens with epilepsy, was embarrassed by the condition. As caregivers, we see first-hand the frustration, isolation and fear of being treated differently that teenagers with epilepsy face. As his mom, it was heartbreaking, and as his caregiver I knew that those feelings of stigma and isolation would make it harder for him to maintain adherence to his medication. We reached out to the people closest to him: coaches, close friends and teachers, and let them know what was going on, because treatment lapses in recently diagnosed patients are inevitable and we knew that he needed a larger support system to hold him accountable.
Even with an expanded support system and the confidence to talk about this condition, I was worried about treatment adherence challenges he would face in college. He would need to consider his medication a major part of his daily routine and maintain adherence while avoiding triggers – without me there to remind him. These are just a few of the things we learned that made the biggest difference in his transition away from home.
- Encourage your child to let his/her roommate(s) know about their condition right away.
Take the fear of judgement away immediately. The epilepsy is not going away, and their roommate must know what to do, and who to contact in case of an emergency.
- Make clear with your child the importance of routine.
All medications come with different instructions: when to take it, how often, and with which meals. When patients fully understand those details, they can better integrate medication into their day-to-day lives, promoting adherence. Forgetfulness is a major reason for non-adherence and something as easy as a designated medication drawer or keeping medication next to a toothbrush can help.
- Take notes!
Encourage your child to document his/her challenges and successes. You can even do the same. I have notes on my phone detailing what my children’s schedules are like and the date/time of any seizures. Sharing this information with doctors can also be essential to optimizing treatment.
- Speak with your treatment team.
Ask your doctor, nurse or other healthcare professional about strategies for keeping your treatment on track, including what medication options may be available
Transitioning to Adult Epilepsy Care – The Importance of the Waiting Room
When my son’s doctor told me that he would no longer discuss my son’s treatment without him present, it was difficult, but appreciated. Setting that boundary made it clear to my son that he was in control.
Though distressing, having to sit in the waiting room turned out to be an important step in the transition of care for me and my children. I trusted that they were asking the right questions and sharing the right information with their doctor because I had used resources and gotten them into the habit of being open and taking notes.
Easing the Transition on Yourself
Epilepsy impacts the entire family. While I’m happy to say my kids are now adults, who manage their own medication and live independent lives, transitioning from caretaker to just “mom” was difficult, and I needed to seek support for myself as well. I encourage any parent facing this transition period to attend support groups and take care of yourself. Caregiver burnout is real. Your child has a team to help with their treatment, you deserve one to support you as well.
If you are facing a transition away from care because your child is going to college or simply growing up, check out https://www.epilapsey.com/patient for more resources.
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