My CHEO Story
We have two sons who have both received excellent care at CHEO.
Our youngest son, Luke, has two syndromes – Down Syndrome and a seizure disorder called West syndrome (a severe form of epilepsy). Luke’s seizures did not respond to medications but they are extremely well controlled by the ketogenic diet which is supported by our amazing dietitian and neurology team. Like many children with DownSsyndrome, Luke was born with a heart defect called a PDA which was repaired at CHEO via cardiac catheterization when he was 6 months old. Luke was also born with a kidney defect called hydronephrosis. In caring for Luke our family has been supported by many departments at CHEO/OCTC including the following – Down Syndrome clinic, neurology, cardiology, nephrology, gastroenterology, ENT, Audiology, Dentistry, infectious disease, RSV clinic, emergency medicine, general surgery, discharge planning, phlebotomy, nursing, CHEO volunteers, social work, physiotherapy, occupational therapy, speech pathology and the seating and mobility clinic.
Our oldest son, James, has also had many visits to the CHEO Emergency department. James is a very active and athletic boy and had three concussions in one year as well as a nasty abdominal injury from a bike accident which required monitoring by the CHEO surgery team. James has participated in two research studies at CHEO about concussions. James also has anaphylactic food allergies so we are very grateful to have CHEO in Ottawa.
Why I'm involved
It is important for families like ours to share our knowledge and experience in hopes that it makes life easier for other families like ours because their children may benefit from what our experience has taught us.
- Reviewer – Genetics RGA 2021
- Research Advisor: Sleep Apnea in Children with Down Syndrome Project
- Research Project Reviewer: Patient-Oriented Research Priorities in Child and Youth Concussion: a James Lind Alliance (JLA) Priority Setting Partnership
- Research Project Reviewer: Mindfulness-Based Intervention for Mild Traumatic Brian Injury in youth with MRI (MBI-4-mTBI+MRI)
- Research Project Reviewer: Development of remote video motion lab
- Research Project Reviewer: Parenting children with mental health problems during the COVID-19 outbreak
- Research Project Reviewer: Prioritization of Children for Sleep Evaluation Using Mobile Video Clips in the Resource-Limited Setting of the COVID-19 Pandemic
- Research Project Reviewer: Transforming Health Information and Research Synthesis through Technology and Teamwork during the COVID-19 Pandemic: Development of Two Open-Access Databases
- Research Project Reviewer: Using Mental Health Apps to Prevent Worsening Mental Health Symptoms in Transition-Aged Adolescents with Epilepsy