Tammy Burke remembers the day everything changed. She and her husband were at their daughter’s gymnastics class and their new baby, JD, suddenly started to cry. She took her son to the Alberta Children’s Hospital where they learned the devastating truth: Their baby had suffered a stroke.
After a week on the Pediatric Intensive Care Unit (PICU), the Nova Scotia natives watched their baby grow into a little boy. They worried about long-term impacts, however he hit his milestones.
There was just one thing, he was not sleeping well and was unusually tired in the day.
The Alberta Children’s Hospital outfitted JD with a portable electroencephalography device to monitor and record his brain activity at night. Then came the diagnosis: epileptic encephalopathy with continuous spike and wave during sleep – more commonly known as CSWS. Their little boy was suffering through near-constant seizure activity at night. It was exhausting his growing brain and impacting every facet of his life.
Today, JD is your typical, hockey-playing, video game-loving teenager. He plays guitar and is doing better in school, and he visits the Alberta Children’s Hospital at regular intervals for intravenous immunoglobin treatments – or IVIG therapy – which has proven effective for kids like JD.
Tammy, who is originally from Nova Scotia, says they were only supposed to stay in Calgary for a short while. The hospital is a big part of why they stayed. “This hospital means the world to us,” she says.
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