We were on a good roll. 11 days seizure free. I was so excited and felt like we were on such a great path. Jayen was acting like his old self again. He was smiling more, laughing more, walking more, talking more, and just happy more. We kept telling ourselves that coming off the Depakote was such a good thing. Now I am not so sure about it.
Tonight Jayen was drinking his bottle and calming down for the night while Daddy and Dalan were holding him, when he had a cluster of 5 seizures. It was the first time Dalan saw one of Jayen's seizures. About ten minutes later Jayen started another seizure, but this time he didn't come out of it like he usually does. This was lasting longer and longer and longer. Daddy tried to get his attention in many different ways. He was talking to him, rubbing his belly, putting objects infront of him, moved him, but still no response. I laid him on the floor and continued to try to get his attention while Matt ran to get the diastat. I was hoping and praying we wouldn't have to use it. After a little more than 5 minutes he came out of it on his own. We did not use the diastat but are still debating whether we should have. What a scary moment! We have never had a seizure last longer than 30 seconds, now we are in a whole new ballgame. They are lasting longer and looking different. It started with the jerk and freezing like usual then he arched his back and was kicking his feet. Matt said it felt like he was trying to kick out of his arms. It then sounded like he was laughing. We noticed at this time that only half of his face was smiling. His left was moving, but his right side was frozen. While on the floor he continued to be unresponsive. His eyes were rolling to the top and he was moving his head from side to side. Around the five minute mark, just before we were ready to administer the diastat, he came out of it on his own. What a scary, horrific, and unforgetable 5 minutes that was. I hope it NEVER happens again.
Thank you Dr. Toth for calling me back and talking us through this. What are we going to do without you?
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