Epilepsy affects one person in a 100 and one family is finding a new medical procedure is helping them cope more successfully with it.
Joanne Cudmore and her two daughters, Kirstyn and Robin, were doing their part to honour the annual worldwide Purple Day campaign to raise awareness about epilepsy Wednesday, March 26, by telling of their own experiences with the condition.
Kirstyn underwent surgery in April 2012 to have a vagus nerve stimulator implanted to help reduce her epileptic seizures.
"Over the last two years we have seen remarkable changes in her, both in the reduction of seizures, her alertness and ability to focus more in school," Joanne said.
The Mayo Clinic defines vagus nerve stimulation as a procedure that stimulates the nerve with electrical impulses, which can be used to treat epilepsy when other treatments haven’t worked.
There is one vagus nerve on each side of the human body, running from a person’s brainstem through the neck to the chest and abdomen.
With vagus nerve stimulation, a device is surgically implanted under the skin of the chest. A wire is threaded under the skin connecting the device to the left vagus nerve. When activated, the device sends electrical signals along the nerve to your brainstem, which then sends signals to certain areas in your brain.
"She has an electric pulse that goes off every three minutes for about 30 seconds," Joanne described. "Now the intensity of that electric pulse can be increased. They don’t have to go back inside to do it."
The difference it makes is huge: it allows for a much quicker response time, with no need for immediate medication.
The device has given her a better quality of life, Kirstyn said.
"I’m way more alert now. Before I had this surgery I was falling asleep a lot, basically unconscious sometimes. And now I know what’s going on around me. I’m almost like a rabbit," she said, moving her head from side to side and cheerfully checking out every corner of the room.
Kirstyn proudly pointed out she’s already gone three months without a seizure.
"I’m trying for four months now," she said. She used have between one and three seizures a day and now her aim is to go six months seizure free.
The bull’s-eye in the target: a driver’s licence.
"Her neurologist said if she had it under control for six months she could go for her learner’s permit," Joanne said.
Meanwhile, Robin has been pushing the idea of Purple Day ever since starting school at Drinkwater Elementary.
"I started it in Kindergarten with just my class and then, in Grade One, I started to tell the whole school," she said. "My principal lets me speak on the announcements and lets me talk about Purple Day."
Kirstyn, too, was looking forward to speaking to the Grade 5 students at that school as part of Purple Day activities there.
Both Kirstyn and Robin have been declared BC Ambassadors by the Purple Day foundation and besides Drinkwater Elementary, both campuses of Cowichan Secondary along with Ã‰cole Mt. Prevost have taken up the idea.
It’s been a long road for Joanne but as a parent, she has seen tremendous changes since the surgery.
"She had her first seizure at nine months old and, as a single parent, I found that very scary. At her first seizure, she had a temperature of 103 and the doctors classified that as a febrile infant seizure [brought on by that high temperature]. The seizures following that never had a high temperature with them. At that point we were getting more worried," she remembered.
"But now, every day, we know what’s going on. It’s not as big of a shock when she has one. It’s part of our lifestyle: what to do and how to react," she said.
The next step is to try to get the Cowichan Valley School District to hold an annual Purple Day to widen awareness of epilepsy and how common it is.
"After all, one person in a hundred has it," Joanne said.
Kirstyn thinks that’s a great idea.
"They have a whole week for some other things; this would just be a day," she said.