Children & Youth with Epilepsy

Emily

Emily

Hello, my name is Emily Austin-Ward and I have epilepsy. The first time that anyone saw me having a seizure was on Canada Day 2016. I was 9 years old and I was really excited to see the fireworks, but that night did not end the way I had planned. All my life of having seizures, I've never remembered them. So it really upset me when my parents freaked out when I had the seizure at the fireworks. They had no idea it was a seizure. After I went to the Peterborough Hospital the next morning, I had a CT scan and the doctors thought it was an AVM (Arteriovenous Malformation). So I went by ambulance to Sick Kids and everyone thought that I needed immediate surgery, but when I got to Sick Kids late that day, they did more testing and said that it was Focal Cortical Dysplasia and I didn't need surgery right away. If you want to know more about how my parents felt during my first years of having epilepsy here's the link: https://www.katiesrun.ca/2017-max.htm. I have now had epilepsy for 4 years; it sucks.

During my first year of having epilepsy I was 9 years old and I had no clue what was going on. I think I went to the hospital a few times to have more testing done, to see if they could try to figure out more about my epilepsy. It's really really difficult to remember right now. In the first year, my parents were all nervous about swimming, heights, sleepovers and me taking my meds regularly. I couldn't go to swimming lessons but I did get to go to gymnastics for the first time ever. My mom and dad stayed too close to me when I went swimming in the summer; it got really annoying. At first, I had pills that tasted really bad because I couldn't swallow the pills whole. I tried everything that I could think of to get rid of the taste; jam, yogurt, applesauce and banana. My parents were able to get my meds made into a liquid at the pharmacy and that was a relief.

Part way through my second year, I remember looking out the car window on my way to a Girl Guides meeting when I had a seizure. My medication had stopped working properly. I began to have several very short absence seizures over the next few months. Although I vaguely remember them, it was a real worry for my parents. To try to compensate for this, my medication was increased. This apparently helped but was not completely successful. It was around this time that I went for a five day long hospital stay while being hooked up to an EEG (electroencephalogram) machine the whole time. I did not know it at the time, but this was to prepare me for the option of surgery if that were to become necessary, which I did not want in any case.

The third year that I had epilepsy, it became progressively more difficult to control my seizures. The increase in medication had the side-effect of making it more difficult for me to fall asleep. Sometimes, when I had trouble falling asleep, it would be very late at night before I finally fell asleep. Then I would have to get up at the usual time for school but if I didn't get a good night's sleep then my seizures were much worse. I began missing much more school so that I could sleep in and feel better. One thing that was really bothering me was any time I stopped to just think about something, my parents would stare at me wondering if I was having an absence seizure. Then they would say, "Emily!" and all I wanted to say was...shut up, I'm thinking!...but I was usually more polite than that and just said, "What!?!"

Emily with her family at Katie's Run

Last year, before Christmas 2018, I was missing more school. My neurologist was preparing me for surgery. Fortunately, my type of epilepsy made me a very good candidate for surgery. Even still, I didn't really want to have surgery. Appointment after appointment, we drew closer to the unknown date of my surgery. One day in February 2019, the hospital called offering a time for my surgery the day before March Break. After talking with my parents, I thought it would be better to get the surgery over with before the summer. I knew that I would be recovering for a while and I wouldn't be able to do a whole bunch of things. I wanted to get the surgery and recovery out of the way before my summer was affected.

To help me prepare for my surgery, Janice, my social worker, let me ask her all kinds of questions in my own words. She answered many of them right away but the ones where she wasn't sure, she got back to me with the answers. This was a big comfort to me and helped me understand what was going to be happening to me. The night before we left for Toronto the day before the surgery, I pulled my first all nighter because of nerves! I slept the whole way there in the car. When we got there, we checked into a hotel and checked in with the Sick Kids hospital. Then I went swimming in the hotel pool for the first time in ages and watched Pirates of the Caribbean III.

(WARNING - this paragraph may seem gross to some people) The next day, surgery day, I was numbly nervous. I know I was numbly nervous because I always get shivery when I'm nervous. All I can remember is that I went to sleep and when I woke up I had a headache. The surgery consisted of a long incision just inside my hairline basically from my temple to over my nose. A circular hole was cut through my skull, about the circumference of a golf ball. The surgeon removed a part of my brain where the seizure activity was focused. That part was just behind my left eye and was about the size of a golf ball. The circular piece of my skull was replaced and reattached with titanium plates and screws. My scalp was stitched back up with one long dissolvable thread with about 56 stitches. I became very swollen in my head and face, meaning that I learned what it felt like to have black eyes. It took awhile for me to feel better but soon I was able to finish recovering at home.

Over this past year, I have been completely seizure free. I am still taking all of my disgusting anti-seizure meds, morning and night. I have to take them for another year at least. Hopefully a year from now, I will begin doing some more sleep-deprived EEG testing to see if I can eventually stop taking pills. Overall, it feels great to be seizure free. When I turn 16, as long as I have been seizure free for at least 6 months, I can try to get my driver's license! I am so happy I am on this side of the surgery. Maybe I will never be normal but at least I am happy!

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