Tyler's story – Bravelets

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Tyler's story

Posted on November 03 2014

Tyler's story
The school called again and again. I thought I was going crazy. My child was ill again? No way. Always after P.E. At first I thought he just wanted to get out of class, then it got serious. Tyler had his first "syncope" at home. He had came home early from school that day saying he was sick to his stomach and had a headache. Later that evening he had his first seizure. Obviously I've never seen a seizure, the first thing to do is stay calm. I failed that. Tyler passed in and out and had a hollow blank stare, hyperventilation , mouth turning blue, didn't know his own name, or recognize his family. I called for an ambulance. The emt's arrived and a police officer was at our home before the ambulance. The police officer did an awesome job and I never got to thank him. Emt's arrived and the older gentlemen right away accuses Tyler of faking. What??? Ok for one I'm no expert, but the poor child does not know his name and his mouth was blue just seconds before . I was unhappy and had doubt placed In my mind. My husband and I were scared. The er doctor looked Tyler over, gave fluids , ct scan, bloodwork, and sent us home. I believed everything was fine, just a little stress or anxiety. I was wrong, I knew it, mother instinct kicked in, I was up all night beating myself up for thinking about the doubt placed in my mind by the Emt and Nurse at the er. I knew in my heart something was wrong. The following Monday the school calls, they explain that Tyler wasn't acting right. Blank stare, headache. I assured them it was ok because we had been to the er for it and they didn't find anything. It got worse, the school nurse , teacher, and principal were very concerned at this point. I gave permission to call an ambulance.
This time the hospital kept Tyler for observation. His pediatrician did some tests and set up a cardiologist appointment . After two days in the hospital we went home without answers, just syncope and maybe a heart issue? The following Tuesday Tyler was feeling great and begged to go to school, no kid ever begs to go to school? I should have known something was up. Like clockwork a phone call from the school , Tyler is having another episode. I again tell them to call an ambulance and we head for the hospital.
This time we were transferred to a children's hospital, where after many questions and lots of student doctors, neurologist, cardiologist,.......ect, we got an answer. Complex seizure disorder. Our world has been turned upside down. In and out of hospitals, no sleep, constant worry, wonder when a seizure will happen, always on guard. After some sleep and kind friends and family support we got our wits about us and now know to stay calm and let God do his work. We are very new to seizures and epilepsy diagnosis. I just pray there is a cure to be found so all babies, children, and adults can live without having the effects of seizures and epilepsy. It is a heartbreaking sight to see a loved ones body just take over, they are still in the body but don't respond until the seizure is over, it's very hard to absorb. Tyler is a tough young boy with a heart of gold, loves everyone. He is so special, very caring and smart.
Tyler May have seizures , seizures don't have Tyler
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