My name is Kitana Bautista and I was diagnosed with childhood epilepsy in 2007 although my first seizure occurred a year earlier. I was 10 when I was diagnosed after having a grand mal seizure after sleeping over my cousin’s house. After being diagnosed I had many appointments for MRIs, CTs, ECGs, and to talk about medicine changes to try and find the right medication, or increase/decrease my dose. It took awhile to get the right medication and throughout that time, I was still adjusting to moving cities and I definitely didn’t want to be labeled or known as the girl who had seizures. So I tried my hardest not to talk about it in front of people. had seizures throughout elementary to middle school, but during my sophomore year of high school after being seizure free, my neurologist decided it was time to see if they could wean me off medication. During the process of weaning off, the doctor would wean me off and then I would have a seizure and we would have to start the process all over again. At the time, I was so frustrated and often I just would feel so mentally and physically drained because in the midst of weaning off, I was trying to keep a high GPA, and trying to impress college coaches playing soccer. After about one year, I was able to stop taking medication and was not experiencing episodes. I went to see my neurologist for a follow up appointment 6 months after and then 1 year after seizure free. That last appointment she congratulated me and said she hoped to never see me again and I have not seen her again. So today I sit here blessed and fortunate enough to say I no longer have epilepsy, I no longer have seizures, and I no longer take medicine.
Having childhood epilepsy had a huge impact on my life and who I am today. It was definitely hard for me as a kid to take medicine all the time and a lot of times the medications had side effects that often left me feeling groggy or cloudy. I was a kid that loved school and learning, I loved playing soccer, & I just wanted to be a kid and have fun. Having childhood epilepsy sometimes got in the way of school because of the side effects of medications or missing school for appointments. It often worried my parents if I had to go to tournaments with other parents. I was never able to sleep over people’s houses because my parents were worried the parents wouldn’t know what to do if I had an episode and even when I did sleep over my cousin’s houses I know they worried. While all these seem like negatives, I choose to view it as a positive impact on my life. Because of epilepsy I learned to have an amazing work ethic because I had to try extra hard in school to pay attention and focus. I am extremely disciplined, since I constantly had to make sure I remembered to take my medicine and slept early. I am resilient and when I hit a setback in life I acknowledge my feelings and frustrations, but I also keep on pushing through. I look at childhood epilepsy as a part of me that shaped me to who I am today.
It has taken me a long time to actually feel comfortable and proud to talk about childhood epilepsy let alone share it to be posted on a website, but there are several reasons I have decided to share my story. Over the years I’ve learned not to be embarrassed because childhood epilepsy has shaped me to be the person I am and the attributes I have attained from it are my strengths. Like so many others, I felt like the only one and have not known anyone else that had epilepsy, so my goal of sharing is to relate/connect with others and make them feel less alone! My hope is that one day kid’s or anyone with epilepsy will not feel embarrassed to share their story because epilepsy may make us different, but we can take our experiences and turn them into our strengths. My hope is that one day the stigma is broken and that we can all come together to support each other and bond through each of our experiences.