Changes

WARNING: SEIZURE VIDEO FOOTAGE

Although this is a short video and this particular seizure was over relatively quick compared to others, this is what I have been watching lately. Cole has been seizing day in and day out for the last 10 days, needing rescue meds every day. He has been having different types of seizures at different times of day, totally confusing the heck out of anyone and everyone. Me included.

This new type seems to be here to stay. I admit, there are some pros to it. However, they are fast, and have no leaders. He stays conscious during the majority of them, and only his facial muscles spasm, though usually more of his face is involved than what is shown in this video. I do appreciate that they seem (for the first time ever) to resolve on their own. He also is making noise for the first time ever! Have to find positives somewhere. They are less than 5 minutes, but can make his speech take a hard hit and he can end up having lots of myoclonics for hours afterwards. OR, he can act like nothing ever happened. Seriously, he had one on Thursday morning and we put him on the bus 20 minutes later. Totally fine for the rest of the day.

Or, he could have one like last night, no facial muscles involved, 30 minutes. Or the myoclonic clusters that literally knock him off of his feet. Man, this Syndrome disgusts me. How am I supposed to help my child when I can not understand what in the heck is going on from day to day...or minute to minute for that matter.

Constantly evolving, constantly changing. I should be seeing some beautiful metaphor in here, but I can't come up with one. You all can give it a shot :) For now, I think that I am going to keep scratching my head and trying to do my best.