•     Mickey
•     Emmett
•     Carter
•     Josie
•     Noah
•     Jim
•     Anastasya
•     Tina
•     Quinn & Will
•     Mackenzie
•     Jennifer
•     Kimberly
•     James
•     Kara
•     Ellie
•     Richard
•     Teresa
•     Owen
•     Katrina
•     Tami

Owen

My son started having seizures when he was 3. His first one was around 11:30 a.m. on Feb. 8, 2008, the second occurred about 2:30 that same afternoon. Another four followed between the Friday of onset and the Saturday of the next week. Owen's first seizure happened while he was watching tv. One second he was sitting on his knees in the middle of the living room floor and the next time I looked at him he was lying on his back with his head tilted to the right, eyes fixed, but rhythmically blinking. He was unresponsive to me until I scooped him up from the floor and he held me back as I took him to the couch. My heart pounded as I drilled him with questions. "What were you doing, Noot?" "Are you okay?" "What's wrong?" "You have to talk to Mama." "I can't help you if you don't talk to me." "Please talk to me Owen.." He just sat on the couch rolling his tongue across his teeth, quizically looking from one corner of the living room to the other. It took about 15 minutes for him to regain his speech and even then his answers were brief, "yes," "no." I decided to ease up on my questioning and give him some time to gather himself. After all, I myself didn't know for sure what had just happened. Finally, halfway through lunch, he was back to being Owen, counting and naming the colors of his fruit snacks. He continued to be fine until a second seizure came around 2:30 p.m. He was singing Winnie the Pooh to me when I closed my eyes and kissed the top of my daughter's head. When I opened my eyes, the same thing that had happened during Caillou was happening again. This time though, he wet his pants and I knew for sure these were seizures. I had worked with children before with seizures. Our local ER did nothing other than send us home with directions to call Cardinal Glennon hospital the following Monday to set up an appointment with a neurologist. We never made it to that appointment because a third and fourth seizure loomed on the horizon. Number three was not as peaceful as t! he origi nal two. They say some people get an aura before the seizure hits and I think he is one of them who does. This time he had gotten in bed with my husband and I just before it happened. He tossed and turned a few times and then we heard him struggling to breath. When the lights were on, we saw that his lips were blue and he was drooling. His body was stiff. His back was arched and his head thrusted backwards. I sat behind him and tried to soothe him while my husband called 911.On the second trip (third seizure- Valentine's Day) to the ER they did a CT Scan and bloodwork and had us go to a hospital in Springfield (we're from IL) for an EEG the next day. The EEG showed nothing and that hospital sent us home. He had number four about 11:30 that night. I took him to our local ER for a third time and they sent us by ambulance to St. Louis Children's Hospital. He had number five shortly after getting settled in to his room and number six struck soon after that. Luckily, we were surrounded by medical professionals who were able to witness the episodes. He was having tonic-clonic (grand mal) seizures. The doctor put him on medicine right away and he hasn't had another seizure since. We use liquid Carbamazepine, a generic for Tegretol. He receives 1 1/2 teaspoons twice a day. He must have his blood drawn every six months to check the levels of the medicine in his blood. He has to stay on the medicine for two years. We just completed year one. I am scared for the end of year two. It took a long time to return to a degree of normalcy and not feel like we had to watch his every move, although we are still very cautious with him. We also have a prescription for rectal Diastat that goes wherever he goes in case of a seizure lasting over 5 minutes. We see his neurologist in St. Louis every six months to monitor his progress. Last May he had a MRI and another EEG- both were normal. Owen's seizures, like most people's, are idiopathic. We don't know what made them start or if they will come back once he is weened from the! Carbama zepine. However, for now, he's seizure-free and there's a good chance he might never have another one. Owen is an adorable, funny, smart, and kind-hearted 4 year old little boy. He is a fabulous big brother to his little sister and new baby brother. He lives an ordinary life outiside of the things we do for his epilepsy. In fact, he begins his first season of T-ball next month. He loves video games and monsters and other people. I know I have given an overwhelming amount of information (and there are even more details I could provide), but I have wanted to share our experience with epilepsy since this all began. It is my hope that our story will help someone else, that maybe another mother will find comfort or at least someone to identify with. Thank you so much for the opportunity to share. I hope we can help.

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Dr. Roy Sucholeiki, MD