Getting the Sparkle Back
Megan Hackenschmidt says January 10, 2021 was “the day the sky fell.” She found her three-year-old daughter Kate in the backyard completely unresponsive, having a seizure. Two weeks later, after a second seizure and second trip to a hospital near their rural Alberta home, Megan and her husband Jordy were filled with worry, still searching for answers.
Thankfully, they were relieved to find validation and quick action at the Alberta Children’s Hospital. As the team began investigating Kate’s case, her seizures worsened. Soon, their little girl was experiencing massive, convulsive seizures once a week. In between, she had absence and other seizures – up to hundreds a day – that caused her to lose control of her neck and head. She was unable to eat or play, as her face constantly fell onto her plate and toys. The team suspected myoclonic-astatic epilepsy (MAE) and conducted extensive testing to confirm the diagnosis. Even before the results were finalized, they gave Kate three medications to help manage the seizures, but sadly, controlling them came at a cost.
“Her sparkle was gone,” says Megan.
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The weeks that followed were upsetting and exhausting for Kate and her family. However, when their neurologist and dietician prescribed the Ketogenic Diet, which involves cutting out carbohydrates and increasing fat intake, things turned a corner and Kate’s seizures reduced dramatically. With Keto, she was able to wean off two medications.
“Her sparkle was starting to come back,” says Megan. “It was like, ‘Oh, there you are, baby.’”
However, in trying to wean off her last medication, Kate began having multiple seizures again.
“That’s when you begin to realize this is a long journey,” says Megan. “With epilepsy, every kid is different. What works for one will not work for another. This disorder evolves in different ways. You add things and take things away, all in an effort to find out which ones will help.”
These days, Kate’s condition has stabilized again. While the family is relieved, they are still living in a state of unpredictability.
“I sleep with Kate each night,” says Megan. “Every time she shifts in her sleep or makes a noise, I’m up, worried she’s having a seizure.”
As their journey continues, the Hackenschmidts are so grateful for the ongoing work at the Alberta Children’s Hospital and its research institute. Megan hopes better therapies and even more personalized options for children with seizure disorders are within reach. She believes this is imperative in preserving their children’s future potential and, just as importantly, their sparkle.
A new vision for the Alberta Children’s Epilepsy Program will support the thousands of families who rely on epilepsy diagnosis, treatment and follow-up care in our community. With your help, they will have access to leading-edge, personalized treatments, clinical trials and research that will reach beyond the limited scope of therapies currently available. By combining both prevention and a focus on innovative treatment, this program will achieve meaningful advancements in research and care that will have direct impact on children and families.
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