SUDEPAware

SUDEP: keep asking questions

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June 6, 2011 was the worst day that a Mother could ever experience. How do you say goodbye, forever, to your son? How does a sister say a final farewell to her brother and best friend?

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Just that day, I had started a brand new job. My 20-year old daughter Alex, a year older than her brother Evan and a paramedic in training, phoned me at around 3:30 in the afternoon. She was about to leave for her shift at a local restaurant in downtown Calgary. She said, “Mom, Evan is still sleeping.” I panicked and told her she had to wake him up, as he had just begun a new epilepsy medicine and I knew how important it was to take it on time.

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Five minutes later, my daughter called hysterically.  “Mom! Evan is dead!" Oh, I will never ever forget that horrifying 'phone call. I screamed, "Call 911!" She said, "No, Mom. It’s too late. He's purple and cold. He's gone. He was face down."

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Evan died five days before his 20th birthday. We held his funeral on his birthday.

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A couple of days later, I received an email from an organization called SUDEP Aware offering assistance. I had never ever heard the word SUDEP before - not from any doctor or from either of Evan's two neurologists who had cared for him over the three years he had had epilepsy.

 

Evan's epilepsy

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Evan was diagnosed with epilepsy at the age of sixteen. He had his first seizure at a baseball tournament playing Babe Ruth in Penticton, BC. Evan was a hockey player and a healthy athlete. It did not matter what sport he tried, he succeeded at it. Evan played in the Alberta Junior Hockey League and had a scholarship to go to school this year in the States.

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Evan's seizures seemed connected somehow to his growing. He had a growth spurt the summer he was diagnosed and we wondered if that could have contributed in some way to his epilepsy. We certainly hoped it would be something he'd grow out of.

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Evan’s fierce competitiveness and toughness never ceased to amaze us. He was a very tough player and played a very hard game. He never once had a seizure playing hockey, nor any other sport, and we were amazed his epilepsy never affected his game. He was what I liked to see in a hockey player, a kid with an attitude on the ice but none beyond.

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Evan was put on anti-seizure medication. After a while the side effects increased and became too much (the most difficult being anxiety and paranoia) and he was switched to another medication. This made him feel better, much happier and with more energy. The problem was, breakthrough seizures were occurring so we had just started transitioning him to a third medication the Friday before he died the following Monday.

 

Awareness matters

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All I want from writing this article is to get the awareness about SUDEP out there.  I also want to stress to parents, please listen to your child, encourage them to openly communicate with their healthcare provider about their epilepsy, consider seeking second/third opinions when things don't make sense and don't be afraid to ask questions, and keep doing so, until you get the answers you're looking for.

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When I look back at Evan’s life with epilepsy, he should be so proud of himself. All I know is that I am so proud of him. What he had to deal with on a daily basis. How he just kept trying to go forward in his life and live with his condition. It was so frustrating for him. All he wanted was to feel better, something most of us just take for granted.

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I love you Bud. I will never be the same. Our house is not the same. No more laughter.

Until we meet again my sweet son.

#2 Forever xo.

 

Corinne Heim
October 2012