Carter’s Epilepsy journey began just after he turned six years old. We heard a strange sound just after midnight, which we thought was the dog, but discovered it was Carter. We didn’t know what was wrong with him or if he was even alive. He was drenched from sweat and his whole body was limp. We called 911 immediately and that is where the adventure began for us. He was transferred from Lakeridge Health Oshawa to Sick Kids Hospital within an hour, and we were told to inform our family of what was happening because the doctors weren’t sure of the results. At Sick Kids Hospital, they ran every test they could think of and Carter was still not awake. No one would tell us what was going on, if he was going to survive, what was wrong... we were just in limbo, waiting. It felt like a lifetime had passed before they realized he was in a seizure.
Before Epilepsy became a part of our family, we were like everyone else, and thought that that after Carter’s seizure he would bounce back to “normal”. Little did we know that Carter had been having seizures since birth and they were just going unnoticed. Carter has both focal and clonic/tonic seizures. He has right, left, and front brain damage which makes it difficult for him to learn. After that night, everything began to make sense; it explained why Carter would know colours and numbers one day, only for it to be as though he had never seen them the next day. I had taken him to the doctor multiple times to discuss my concerns with this and the doctor would tell me that he was an “active boy”.
Cater has faced many challenges with doctors and at school. I would take him to the neurologist and explain Carter’s behaviours and reactions to medications. It wasn’t until Carter demonstrated symptoms – the blank stare, twitching, and repetitive speech – at the appointment that the doctor believed me. We were sent for our first week long EEG where they discovered that Carter’s brain was more active when he was sleeping than it was when he was awake. They had to “reset” his brain, which meant back to Sick Kids Hospital for another week, high doses of medications and praying that this would help him. Luckily, it did, but the challenges continued.
Carter has changed medications many times; he has either outgrown them, the side effects were too much for him, or they just weren’t right for his type of Epilepsy. The medications make him feel exhausted and cause him to sleep all the time. At school, no one understood Carter’s memory issues or understood why he would have to ask for instructions to be repeated. He would be having focal seizures multiple times a day that were going unnoticed. It was thought that Carter was misbehaving which wasn’t the case. It felt as though he was being punished for something he had no control over.
I have fought so many battles and have had many challenges with Cater, but I will not stop – he is my son and I love him with all of my heart. I will never underestimate him. I have made it my mission to make people understand my son, no matter what it takes. We are so grateful for the strong support that we have from friends and family, and also from our local Community Epilepsy Agency. Epilepsy Durham Region helped me to find the strength to fight these battles and without their support I do not think I would have the mindset or knowledge that I have. Both Chelsea and Dianne at Epilepsy Durham Region have been my shining light. They have helped me to work with the school board to ensure Carter is better understood and has a plan for success, helped us to find an Epileptologist that fits our needs, and have been a shoulder for me to cry on.
Carter has taught us so much. He sees the world differently than us, and he has taught us to take time to see the smaller things in life! We have decided that we want Carter to live life and not let Epilepsy rule his life. We know that he does have limitations as to what he can do, but we let him live!
- Julie, Carter's Mom