On the afternoon of January 2, 2022, my husband Matt, myself and our two boys Maverick and Archie were relaxing on our last day of holidays before going back to work and day home. Our oldest son, 3-year-old Maverick had a fever and was complaining of not feeling well. We put him down for a nap in our bed with Matt.
Minutes later, as I was about to leave the house for groceries, Matt yelled at me that something was wrong with Maverick and came running down the stairs with him. Mav had become unresponsive in bed with his eyes rolled back. While he was still breathing, we had no idea what was going on and assumed the worst.
We frantically called 911 and freaked out not knowing what in the world to do.
The Firefighters arrived in minutes (which felt like hours), and it seemed they and EMS knew fairly quickly that it was a seizure. However, for parents new to an Epilepsy episode, this was the most frightening thing we had ever experienced.
After Mav’s seizure, which lasted about 3 minutes, Mav and Matt were taken to Children’s Hospital via ambulance while I stayed with our baby Archie. They waited in one of the triage rooms for what seemed like an eternity until we were finally told that Maverick most likely had a febrile seizure which can be relatively common in young kids. Matt and I had never heard of a febrile seizure before and were not sure what this meant for Maverick.
Before we were sent home, we were given some information about febrile seizures and were told that if he had another seizure within 24 hours to call 911 immediately. Epilepsy was not discussed at this time. We assumed that our stress and fear had peaked for the day, but we were wrong.
My Dad, Kelly, picked us up from the hospital at about 7:00 pm and drove us to my parent’s house. We had dinner and tried to decompress after a very scary day. Approximately 1 ½ hours after we returned to my parent’s house, Maverick was sitting on the couch beside my dad watching a show on his tablet. Suddenly he zoned out and fell over onto the couch. Mav’s eyes had rolled back, he was not responsive and started getting pale.
This time the seizure lasted 25 minutes and included convulsing and extremely shallow breathing. Being that this time the seizure lasted quite a long time, we were extremely worried that something very serious was happening. We just kept telling Maverick “we love you so much baby, we’re so proud of you”.
We thought that Maverick might not still be with us by the time the Emergency Services arrived. It was the longest half an hour of our lives as we waited and then watched the Firefighters and Paramedics work on Mav to ensure that he would be okay. Maverick and Matt were sent back to the Alberta Children’s Hospital that evening again by ambulance for what would end up being a 3-day stay.
The following day on January 3, 2022, after an EEG, Maverick was diagnosed with Panayiotopoulos Syndrome, a form of Epilepsy. Mav had contracted Covid-19 sometime in the previous week, which lead to a fever that the Doctors believe triggered the seizures.
Upon meeting with Maverick’s Neurologist after the diagnosis, we agreed to start him on the medication they prescribed to control his seizures (Keppra) right away. Matt and I had a few meetings with Neurologist who explained what they had found during the EEG, the next steps, worst-case scenarios, and possible triggers for his seizures.
After Maverick was sent home, he went to bed in Matt and I’s bed for months as we were so scared that he was going to have a seizure while he was sleeping. We were so fortunate to have our friends and family rally around us during and after these traumatic events, especially during the first few weeks after his diagnosis. They helped give us the strength to be there for our boys, to stay positive and grounded.
In July of 2022, Maverick had an MRI to rule out any abnormalities or other medical conditions that may be causing his seizures. Fortunately, everything came back clear. Even though Maverick’s epilepsy diagnosis has caused a lot of emotional turmoil, stress and uncertainty, it has also become our new normal.
We are so thankful that Mav is otherwise healthy and that he is still with us. We are hopeful that Maverick will eventually grow out of his Epilepsy, as his neurologist has stated that most children with this type of Epilepsy do. If he does not, we will adjust as we did upon his initial diagnosis.
After processing the enormity of the diagnosis Matt and I committed to supporting and spreading awareness of epilepsy initiatives. We hope that our story can help others realize that they are not alone in this fight and that epilepsy is not something to be embarrassed about or keep to themselves. We are so proud of Maverick and his story and hope to dismantle the stigma against epilepsy and those diagnosed with it.