Last week on Wednesday January 9th Evan had an EEG. Probably his 15th in the past year. He hates them and I hate taking him and putting him through the EEG but I know it is needed. He said No, the minute I rolled him into the building. He did not want to lay on the bed. He was playing on my phone and that helped keep him occupied. The part that he hates the most is the exfoliating scrub they have to use to clean the skin. He sits mostly still for the rest of it. Sometimes he does this thing where he kind of just goes limp and breathes funny, I wonder if he is just checking out because he hates the process so much.
We had to get him to sleep in this EEG do he had 2 doses of Zanaflex to get him to sleep. During the EEG before he fell asleep the tech suggested I take the phone away because it was distracting him from falling asleep. I understand her saying this. But I had to laugh inside of myself. Really? This child is going through a tramatic event in his life and he doesn't want to be doing it and you want me to take away the thing that is keeping him calm. Seriously Lady. Well, I had given him his first dose of Zanaflex as she was hooking him up in hopes of calming him. So about 20 mins into the EEG I gave him the 2nd dose and he was asleep in about 15 minutes. Given the fact that Evan does not like the EEG he really does well. He fusses and kicks but he's not screaming or crying and we get the test done which is important.
Once the EEG was hooked up and running I was looking at it to see what was going on. I feel that I am pretty well versed in reading Evan's EEGs. I can tell when he is having a seizure and when things are calm. Well, I guess I don't know as much as I thought. I thought I saw seizures happening and I was concerned that something weird was happening in the sleep portion. I had worked myself up into quite a mess that night. The next day was his neurology follow up and I was certain I was going to hear that he was having seizures and the ketogenic diet was not working as we had thought. Well..........
That was not at all what I heard. His neurologist is happy with the EEG. Of course it is not perfect as Evan has a brain malformation. But he said he is having spikes but not seizures, the absence activity is gone and the continuous spike wave in sleep in only happening on the right side now. This is good news. Each day that goes by I feel myself relaxing a bit. But then he does something weird and I go on alert mode again. Of course my hope is that Evan stays seizure free but I feel that in reality that will not happen. So I am doing my best to enjoy life and not stress too much about seizures. Way easier said than done. But I am so happy to share good news in regards to seizures.
Stay Tuned next time for School Drama!
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