Children & Youth with Epilepsy
Katie Wesley
I will never forget the day...Mrs. Wesley I think Katie had a seizure today. My face dropped, instant disbelief, seizure?? You're only telling me this now?? You didn't call me as soon as it started? You didn't call 911?? You just did nothing??
No, Mrs. Wesley, she had an absence seizure. A WHAT? You are mistaken, that is just Katie … maybe she was just tired. She definitely did not have a seizure.
Katie and I walked home from school that afternoon like any other day, yet I couldn't help but be overcome by the emotions, did this really happen? How could I not have noticed this? INSTANT MOM GUILT!! I should add that up until this day, like so many others, a seizure was dropping to the floor and convulsing. I had no clue there were so many other types of seizures.
My sister was diagnosed at 15 with grand-mal seizures and that was the first time epilepsy rocked my world. Little did I know it would knock me down again.
So from then on I watched Katie like a hawk, aka Helicopter Mom. I was trying to see what the teacher saw that day … NOTHING. I convinced myself she was wrong and it was a one time thing, life would go on as planned.
Then that dreadful day came, my world truly came crashing down. A phone call—the one I had convinced myself would never come...."Kristy, I saw what the teacher saw." Katie was at a birthday party. They had been playing a game and when all the other kids stopped, Katie kept walking. The parents tried to call her and stop her but she didn't respond and a few seconds went by and then she came around and went right back to playing the game. That's when I knew this was out of my control.
Katie was quickly seen by our family doctor and then by a pediatric neurologist and diagnosed on the spot with absence seizures. Katie had her first EEG in mid-December 2013, was put on Valproic Acid, her first of many anti-seizure medications. As time went on, Katie tried numerous medications from Lamictal, Frisium, Keppra & Clobazam. She was scheduled to go to the Keto Diet clinic, genetic testing, VNS implant, anything to give her some relief and us some answers. She was so close to being classified as medication resistant and then our prayers were answered. The final combination of Lamicatal and Clobazam and Katie's seizures were finally under control.
After a year of being seizure free, we were scheduled for a visit to the EMU at Sick Kids in Toronto. This was not Katie's first visit and it would prove to be the longest night of my life. I watched that monitor all night long, not really knowing what I was looking for, just hoping and praying for some good news. We woke up the next day and were released, we had an appointment with the neurologist that afternoon and when we walked through the door we checked in and they asked how the appointment went, seeing the sleep deprived look on my face. As we were waiting to see the doctor, the report had come in, when she called me up to the desk my heart sank. I knew that the bad news was coming…."Katie is seizure free, her test was clear…no activity, the meds are working." My head dropped into my hand and the tears started, my prayers were answered. Three long years of every medication under the sun, every side effect known to man, the worst of them Keppra Rage. If anyone reading this has witnessed this you know exactly what I mean. It is almost demonic.
We continued on with the meds until our next 6 month check-up as long as Katie remained seizure free we could move on to the next steps…sleep deprived EEG and as long as that came back clear we could start tapering her off and slowly go from there.
Which leads us to today. Katie is almost two years off her medication and remains seizure free for the last 3 years. On August 19th we will celebrate 4 years. She is strong and determined. Where she once struggled in school, she is now on track with her peers. You don't realize the toll that having 40 or more 30-second seizures a day has on a young person. There were so many gaps in her learning and social skills but she never let that break her confidence. Katie has taken on a leadership role at school, volunteering for many different functions, helping out in the office and peer monitoring in the kindergarten rooms during lunch. She has been nominated to represent her school for programs such as Ambitious 7's, a leadership program for grade seven girls. Katie loves to play sports, her favorite is baseball. She rides horses at a local barn usually once a week. She loves to be around animals and they love her just as much. She enjoys music and art and also just being with her friends and spending weekends at our trailer up north.
Katie would describe her epilepsy as what makes her unique, but she never let it get in her way. She advocated for herself, made sure her friends knew what it was and how to handle it. She loves to educate anyone she can on epilepsy. She almost wears it as badge of honour. This has inspired a very good friend of ours who also has epilepsy to speak up about her struggles living with epilepsy and to realize that it is nothing to be ashamed of. Katie would tell you the worst part about having epilepsy is the glue they use during the EEG testing. She would also tell you the best part about having epilepsy is the Food Train at Sick Kids. She has never let epilepsy stop her from achieving her goals, if anything, it has shaped her into the person she is today—empathetic, kind, loving and supportive.
Thank you for reading our story. We hope that it brought a smile to your face. We are so thankful for organizations such as Katie's Run. Not only does it help spread awareness and education for epilepsy, it showed my daughter that there are so many other unique people out there like her and she is not alone in the fight. A quote that we love and has helped us stay focused on the good is "Something will grow from all you are going through and it will be you." Unknown
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