Written by Grandview Kids Neurologist Dr. Chatur and Grandview parent Abby V.
International Epilepsy Day is a global event held on the second Monday of February each year and is dedicated to raising awareness about epilepsy, a neurological disorder that affects millions of people worldwide. This day is an initiative that unites people from around the world to raise awareness about epilepsy and its impact on individuals and communities.
Epilepsy is a neurological condition characterized by recurrent seizures, and it affects people of all ages. By shedding light on epilepsy, this day aims to dispel misconceptions, provide education, and foster a more inclusive and supportive society for those with epilepsy.
Grandview Kids Neurologist Dr. Chatur talks about her work experience with Epilepsy:
As a neurologist, International Epilepsy Day is an occasion that is near and dear to me. Epilepsy as an entity in society is complicated. Though epilepsy can be invisible, many people can face stigma due to their diagnosis. There is an evident need to create greater awareness in the general community. After all, epilepsy is the most common neurological condition in the world. But though it is the most common, every individual presents in their own unique way and the implications that epilepsy can have on someone’s life can be variable. My role as a neurologist is to help diagnose, treat and support patients and families who are diagnosed with epilepsy.
I can only do that by combining the understanding of epilepsy as a medical phenomenon while also understanding my clients and what an epilepsy diagnosis means to them. Medically, epilepsy is a disorder characterized by the risk of recurrent seizures. Seizures are characterized by abnormal electrical activity in the brain and can cause involuntary body movement and changes in awareness and sensation. There are many different forms of epilepsy and types of seizures.
But the implications of epilepsy vary from individual to individual and people come to my clinic with different understandings of epilepsy. Over my years in medicine, I have found more and more people are aware of epilepsy, but still, so many of the families I work with feel like they are navigating their journey alone. I am honoured to be part of my patients’ unique journeys. From the youth working towards seizure control with aspirations of getting her driver’s license, to liaising with families to be sure their child with medically refractory epilepsy will be well-supported in the classroom, to the child with absence epilepsy enjoying school after realizing their struggles were due to undiagnosed seizures and the adolescent worrying about what their epilepsy could mean for their future children. Every epilepsy journey is different, and my hope is that as community awareness grows, children and families with epilepsy will feel seen and cared for.
One of the biggest supports I have found is for people and families living with epilepsy to know that they are not alone. Thank you for celebrating International Epilepsy Day with us here at Grandview Kids. Let us work together to continue to raise awareness of epilepsy, not just today but every day.
*Note, the patient examples are amalgamations of various clinical encounters and are not descriptive of any particular patient. *
Grandview parent Abby V. shares her son Wesley’s story:
A new diagnosis, even for already medically complex children, is always a challenging and bittersweet moment. For many families with a primary diagnosis, a new condition or secondary diagnosis might not happen until years later. My son, Wesley, went for a routine sleep study at Sick Kids Hospital to address his obstructive sleep apnea in March 2023 and was flagged for Epilepsy. While the clinic observed his sleep patterns, they noticed irregular spikes in brain wave activity. He was referred for a full sleep-deprived EEG scan and the results showed significant pre-seizure activity all over his brain while both awake and asleep.
As a child with Hydrocephalus, he is prone to have seizures at some point in his life, but we had never witnessed Wesley experience any typical grand mal seizures and prior EEG scans came back without significant findings. In April 2023, we were referred to Sick Kids Neurology for a consultation but were told the waitlist was long. There didn’t seem to be any differences in his behaviours, intellect, and physical abilities to concern us, so we didn’t mind the wait. However, in the following months, we noticed more episodes of staring/dazing off for a few seconds/minutes. We also noticed a change in his mood and behaviour which was off-putting since he is usually a very friendly and social child. By autumn, he had a few atypical falls, and his new teacher, who had known him the previous school year, was concerned about his academic progress in a few subjects. He was not at his baseline and showed signs of intellect regression. He also had a few scary episodes in the class where being upset would lead him to cry uncontrollably and fall into a state of unconsciousness, which we now know were likely seizures.
I reached out to his Grandview Kids developmental paediatrician and she told me that there would be a new Grandview Kids paediatric neurologist. This news was a relief to our family as we weren’t scheduled to see a Sick Kids neurologist until February 2024. Wesley needed help sooner since whatever was happening in his brain was adversely affecting his daily living. We met with the new neurologist, Dr. Chatur, and received an official Epilepsy diagnosis. We learned that there are different types of seizures, including the silent seizures he was having, and the amount of pre-seizure brain activity made him at high risk for grand mal seizures. She was able to inform us of the risks of untreated seizures and help us choose medication that would work best for his situation. She educated us on the benefits and risks of his new medication and the routine of slowly increasing the dosage until reaching the desired dosage to limit the side effects and let his body adjust to it.
The new Epilepsy diagnosis was heartbreaking as it meant having to add another layer of complexity to Wesley’s life. But the diagnosis also gave us the medication we needed to manage the seizures and to better advocate for him, especially at school. Now that the school is aware of his risk for seizures, we are comfortable that they know what signs and symptoms to look out for in case a seizure is about to occur, and they can advocate for more one-to-one support for him in the classroom. A diagnosis opens doors to resources and early intervention. We are thankful for Grandview Kids and their team of medical staff that makes local paediatric care readily available. Without this, we would still be waiting for the help we desperately need.
Check out more Grandview Kids articles
- International Epilepsy Day – February 12
- Introducing AlayaCare, our new Electronic Health Record
- Rare Disease Day – February 28
- Congenital Heart Defect Awareness Week – February 7 to 14
- Feeding Tube Awareness Week – February 5 to 9