Read Erin's story about her son's diagnosis and find resources below.
Our story
My son at age 18 months had a febrile seizure (a seizure that is triggered by a quick oncoming fever). After spending 6-8 hours in the hospital we were discharged with no clear indications of what the future may bring. We were told that it could happen again or never again. Approximately a year later, in February 2021 he had another seizure two days in a row at home and this led to a weeklong stay at Trillium hospital. Within a few days we had a confirmed Epilepsy diagnosis based on an EGG, a new medicine routine and may unknowns ahead. He has endured many medical appointments over the past year such as EGG’s, MRI, genetic testing, as well as a visual evoked test. Based on our own data and observations it was very clear to us that one of his triggers is related to photosensitivity and this was demonstrated on the visual evoked test as well. By manipulating our environment, being consistent with medication, and providing him with tinted (non-prescription) glasses, we have been able to find a somewhat stable baseline again. While there are many unknowns, my husband who is a special education teacher and myself feel that we are fortunate that we have the knowledge, resources, and professional experiences that we to do to handle this unexpected situation. Through sharing our story, we hope to help others who find themselves along an Epilepsy journey.
Resources
Epilepsy Ontario
Epilepsy Southwestern Ontario
https://epilepsyswo.ca/ - specifically for PEEL residents
https://epilepsysco.org/programs-services/sunny-days-camp/ - summer camp for children with Epilepsy and their siblings
https://epilepsyhttps://epilepsyswo.ca/teacher-toolkit/swo.ca/student-support-program/ - offers school training/awareness
https://epilepsyswo.ca/teacher-toolkit/ - teacher tool kit
https://epilepsyswo.ca/wp-content/uploads/2018/05/seizure-first-aid-poster.pdf - seizure first aid poster
Epilepsy Toronto – recently allowing residents outside of Toronto join in on virtual events such as parent/sibling support groups