In this profile, we meet Matt, whose daughter Zoe had her first known seizure at three weeks old. He and his wife don’t know the exact underlying cause for it, but she has global developmental delay which includes being non-verbal and visually impaired. Here Matt shares his family’s story.
MATT
“SickKids gives us some clarity in a cloudy situation. Our daughter Zoe had her first known seizure when she was just three weeks old. She’s now four years old and has been diagnosed with epilepsy.
“We still don’t know the exact underlying cause for her seizures, but she has global developmental delay, which includes being non-verbal and visually impaired.
“Given Zoe’s challenges, she has a full team that helps treat her. SickKids has top specialists, which helps streamline the number of physicians and viewpoints, making it easier to identify specific problems and potential solutions.
“This is how our SickKids journey began. For Zoe’s vision impairment, SickKids offers the specialization to have a pediatric neuro-ophthalmologist.
This provides the next level of care above general ophthalmology.
“For example, after several appointments with our ophthalmologist at our local hospital we still didn’t really know how much Zoe could see. She has something called CVI – cortical vision impairment.
“She has eyes, she has a brain and the network that runs between, like a camera and the television, and we were unsure how much her eyes and brain were working together.
“We were referred to SickKids to work with a top neuro-ophthalmologist. Working with one person who specializes in both vision and brain function, was an opportunity to get some further insights on Zoe’s condition.
“SickKids also allows us to access more technology. There is something called a VEP – visual evoke potential — where they attach electrodes to the head and they run through two tests, one is a series of flashing lights and the other is a checkerboard pattern, and it gauges how much the brain is reacting to the stimulus of each one.
“At SickKids we can access more testing and specialized doctors who can offer great insight into our daughter’s scenario. Zoe can’t talk to us, and that is one of the biggest hurdles that we have.
“She is not able to tell us ‘I can see this. I can’t see that.’ So having access to the technology to provide more light in an unclear situation gives us answers to things that we would otherwise not.
“It keeps you optimistic. There is a lot of grey area in what we deal with. The different tests at the SickKids gives the reassurance that you are doing everything that you can for your kid.”
