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Thank you so much for attending my son's PPT meeting. I really believe you helped the team understand my son's epilepsy. Parent
Faces of Epilepsy
Kollin LamontagneKollin is a crazy, happy, often outrageous 6 year-old boy. On any given day he is dressed in one of his many costumes, dancing and singing in the living room. Kollin frequently demands whole family hugs – ordering his reluctant teenage brother to participate. Kollin also goes to bed at night, always making sure he’s taken his medicine so he doesn’t have “the wiggles”.
By a stroke of luck, I happened to be near my cell phone locked in the closet of my classroom the day Kollin had his first seizure at 4 ½ years old. It scared the daylights out of my husband and me, as well as his teachers at school. My husband and I raced to the emergency room and met Kollin as the EMT’s wheeled him into the hospital, still in recovery from the episode but trying to tell us he was ok despite his slurred speech.
After a second seizure in March of 2010, we had so many questions, many of them with uncertain answers, everything was maybe, possibly. A few months and several doctor consults later, life started to feel back on track. Then a couple days before his first day of Kindergarten, Kollin had another seizure, and another one that night. Kollin was diagnosed with Partial Onset Epilepsy with Secondarily Generalized Seizures. This also started the medication rollercoaster.
Kollin’s kindergarten year was chaos, with several seizures a week, some days with two seizures. The year involved med changes, behavior changes, learning struggles, and emotional turmoil for all of us. Kollin spent every day cycling through feeling tired, hyper, sad, but mostly angry. He was rarely happy.
A year later in March of 2011, “Kollin’s Krew “ participated in the National Walk for Epilepsy in Washington D.C. When we signed up, we did not understand that our mission to increase awareness would be challenged by some of those closest to us. Epilepsy has caused a huge rift in our life, cutting out half of our family based on differences of opinion. They believe that we should keep Kollin’s seizures a secret therefore if they go away, no one will ever need to know. Seizures will hold him back in life, take away opportunities. We believe differently. We believe we have been given this challenge and we need to use it to help others understand the impact epilepsy has on the lives of everyone involved.
Everything we have learned over the past two years has gotten us to a much more stable place. Kollin’s seizures are currently under control and first grade is going much smoother than Kindergarten. At night, Kollin sleeps with an Emfit movement monitor. If he fidgets it sets the alarm off, and Kollin yells to tell us that he’s ok. If he trips over his feet, or knocks into something, he’s always quick to tell us he’s ok. Kollin’s been reassuring us that he is ok since that day in November. Hopefully, Kollin will outgrow his seizures at some point but they will always be a part of him.