Last year, Kylee started noticing some unusual movements in her baby daughter, Emalyn – her head would pull left, she would hold her left arm tightly to her chest, her eyes would track left, she’d blink rapidly and her leg would move as if she were pedalling a bicycle. Kylee sensed something potentially serious was going on, so she took Emalyn from their home in Drumheller straight to the Alberta Children’s Hospital.
In the Emergency Department, a neurologist was paged to do an assessment. “He ordered an EEG and MRI for Emalyn, but he told me even before those tests that he was 95 percent sure this was epilepsy,” says Kylee, adding this news came as quite a shock. “I only really knew about the seizures with convulsions you see in movies,” she said. “I didn’t realize there are so many different types.”
Emalyn was started on an anti-seizure medication right away and admitted to hospital. Her EEG confirmed an epilepsy diagnosis and showed the seizures were in her right temporal lobe, which explained the left side of her body being affected. She underwent testing to rule out an underlying genetic condition and structural abnormalities as the cause. As Emalyn was having ‘breakthrough seizures’ which would override the effects of the medication, she was started on a second drug and the combination seems to be working.
During Emalyn’s five-day stay, Kylee and her husband, Robert, were told about a special donor-funded program called KidSIM, which makes it possible for families like theirs to take specialized training regarding their child’s medical condition and how to respond in emergencies. A couple of weeks after Emalyn was discharged, Kylee and Robert were back at the hospital with much of their “village” – their two eldest kids, aged 15 and 12, Emalyn’s grandma, two of Emalyn’s aunts and an uncle, plus Kylee’s best friend.
The KidSIM team had prepared a personalized training program for the group, where they learned to recognize the signs of a seizure in Emalyn, as only Kylee and Robert had witnessed these episodes before. Using a lifelike mannequin, they were able to practice how to hold Emalyn or lay her down while she’s seizing to prevent choking. They learned how and when to administer rescue medication and when to call 911. They even went through scenarios specific to their family, like how to keep Emalyn’s three-year-old brother calm and distracted during an emergency, and getting the family’s pets put away and unlocking doors for paramedics.
KidSIM training has given Emalyn’s family the confidence they need to handle an emergency. It’s also given Kylee and Robert some independence, knowing they can leave their baby girl in the capable hands of family members. “Before the training, I was overwhelmed and anxious; I couldn’t leave her and was second guessing what I was seeing, questioning what was seizure activity,” says Kylee. “After the training, I felt a lot more prepared and I felt really good knowing there were other people who could help.”
