I remember the first time we noticed something was wrong. It was the beginning of September 2013, Michael was at a cub scout meeting. During the opening flag ceremony, he was standing at attention and fell. Like a tree, hit his head on a table on the way down. Our cub master who happens to be a paramedic instructed me to take him to the ER to be checked out. They didn't find anything wrong with him, and referred us to his pediatrician. We went to the pediatrician the following day and he thought maybe Michael was growing too fast and he needed more sodium since he was active in sports.
A few days later, Michael was in the shower and we heard him fall down. Jeff ran into the bathroom to find Michael lying on the floor of the bathtub, disoriented. He told Jeff he "passed out" again. We gave him the shower chair to sit on while he finished his shower and Jeff stayed with him. A few hours later, as he was sitting at the computer doing his school work I noticed a blank stare on Michael's face. I tried talking to him, and there was no response. His eyes were open...lights were on, but nobody was home. I called my mom who suggested I take him back to the ER. They checked him over again and once again couldn't find any reason for these "episodes" (not yet diagnosed as seizures, although we suspected that's what was going on). We saw his pediatrician again, who wanted him to be seen by a pediatric cardiologist and neurologist. Because of a snag with his insurance neither of those specialists would see him. Michael continued having multiple seizures a day, accompanied by headaches until the end of October. That's when I got a call at work from my husband telling me that Michael had multiple seizures that morning and was having chest pains. I left work right away and we took him to the ER once again. We sat in the waiting room for 4 hours, where Michael would have another 3 seizures during that time. When he was finally taken in a room to be seen, we got a doctor who wanted to admit him and get this figured out, insurance issues be damned.
So that's what happened. October 30, 2013...the day before Halloween, Michael was admitted into the hospital. He would have blood work, a heart monitor, EEG, Echo, MRI, all which came back PERFECTLY NORMAL!! And he was seen by a pediatric neurologist, who diagnosed him with epilepsy after hearing what we had to say about his symptoms and behaviors. Michael was started on medication and released to go home Halloween night.
By the next day, Michael's new medicine had his head all messed up. He hadn't had anymore seizures, but he was having such bad anxiety, he couldn't even function enough to do his chores, or school work. Since it was the weekend, we had to wait until Monday to call the neurologist's office back. Turns out they didn't taper up the dose like they were supposed to after the loading dose. So we were told to half what he was taking for a couple of days and then we would taper it back up. The following day, not only did he still have the bad anxiety and not able to function, he began having seizures again!! The entire month of November was full of medicine changes, tapering up on a new medicine, and tapering down off of the first one. Lots of seizures and anxiety, and no sleep. Jeff and I were sleeping in shifts so Michael would have eyes on him at all times. The last seizure Michael had was the day after Thanksgiving, and he was off the medicine that wasn't working. Until Christmas day when he forgot to take his morning dose and had a seizure that night. It's been a long year, but now we're doing pretty good.
Here's to being seizure free for an entire year!!
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