Elliott's Epilepsy Entourage
Meet Elliott and his mother Jessica
Elliott experienced his first seizure just two months before his 2nd Birthday. My husband and I weren’t quite sure what happened as he was staring off and was unresponsive for about 3-5 minutes after having breakfast one morning. He became sleepy afterwards. I began researching what this could have been, and I came across some information that led me to believe he may have experienced a seizure. He was back to his normal happy self, and we continued to monitor him and decided that if it were to happen again, we would video tape and call an ambulance to make sure we could explain what happened to him.
We didn’t experience another seizure until almost exactly 1 month later when the daycare called me at work and said he was having a seizure during his nap time. At this point, an ambulance was called; it had been over 15 minutes, and the paramedics couldn’t get a response either. I immediately called my husband, who was working from home, and he just made it in time to get into the ambulance. I work at the hospital approximately 15 minutes away from our daycare, and I can tell you waiting for the ambulance that is bringing your child feels like a lifetime. They had to administer medication in the ambulance intramuscular because it had been over 25 minutes of no response from Elliott.
When I saw Elliott in the trauma room, hooked up to all the machines, it was heartbreaking. He was exhausted and slept for about 3 hours after arriving because of the medication and length of his seizure. We learned that this incident is called status epilepticus. Elliott was admitted to the paediatric floor shortly after he woke up. They put him on daily medication since this was his second unprovoked seizure. During our 3 days in the hospital, he got an EEG done. We weren’t sure if we would be allowed to go trick-or-treating as it was Halloween, so we brought his costume and did some trick-or-treating with the nurses on the paediatric floor. Luckily, we were discharged that afternoon and could go trick-or-treating that evening with his brother in our neighbourhood.
When we met his paediatric neurologist in December, Elliott was diagnosed with focal epilepsy. She suspects he has experienced more than the few seizures we know of. She told us he will have to continue to take medication every evening before bed. She explained that his EEG came back as normal and that an MRI might give us more information where his seizures seem to be isolated to one side of his brain - explaining why he doesn’t have movement during his episodes. She also told us it is likely the “transition” of sleep and awake that trigger his seizures.
Fast forward to 3 months of being on medication, Elliott experienced his first “breakthrough” seizure, again during nap time at daycare. For the first time, he had to have the emergency medication administered to help stop the seizure. We knew this was a possibility, but you just have that hope that the medication will do its job, and it wouldn’t happen again. After that, we had to increase his medication.
We have since met with Elliott’s paediatric neurologist again, and his MRI hasn’t shown anything of significance related to his epilepsy. Although she noticed something that wasn’t quite clear on his MRI, we won’t know until further investigation, which she is looking into, and it may warrant a re-scan of his brain. However, we will be changing his type of medication due to a few side effects he has been experiencing. We hope the change comes easy to him and has a positive outcome along with the new medicine. We are lucky to have such a great team: our friends, family, neurologist, our daycare… So many wonderful people care about Elliott, and I cannot thank our daycare enough for their involvement and the fast actions of his teachers during situations that we know are scary for all involved.
I would say the hardest thing is the unpredictable nature of epilepsy and not knowing when the next seizure will be. I believe that is why it is so important to spread awareness. Your actions can make a big impact on someone who isn’t in control of what they are experiencing at the time.
Elliott is a happy little boy who enjoys dancing, singing, and playing with his brothers. We won’t let epilepsy define Elliott; it is only one part of him. A cure for epilepsy would mean he could experience childhood without having to take daily medication, without hospital visits and the limitations on future sports or activities he might want to participate in.
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