Potiga

We decided a little over a week ago to try the Potiga medication our neurologist prescribed at the last appointment - to see if we could get any better control of the frequent sad and sometimes angry spells that bother Ezri throughout the day. It was a tiny purple pill (perfect color for epilepsy!) and Ezri was to take one per day, go up to 2 per day, then 3 per day and finally 4 per day to be spread as a morning dosage and an evening dosage and each increase taking a week. At the starting dose of only one pill per day we did not notice any difference in Ezri's behavior or seizure episodes and became almost hopeful that this little purple pill would work it's magic on her. Even though it was 2 days early, on the 5th day, we decided to go ahead and step her up to the 2 pills a day. This, based off the fact that we could see absolutely no difference in mood, side-effects, anything from the 1 pill/day. Immediately from that first day of taking a second pill per day, Ezri had bad days. These were the kind of days that you struggle to get through and try your best to be patient and kind when inside you're screaming at the frustration of the irrationality of HH. Ezri was upset over everything--even more so than her typical 'bad day' upsetness. She was also being frequently overcome by sort of a fearful, worried emotion and constantly calling for me as she was so worried Owen might do something (something that in reality would have been just fine) or that Kes was doing something (with the something that Kes was doing being perfectly okay too). These were very difficult, long days. Because it is spring break for the girls they've been spending some time at Mimmim and Grandpa's house while I've been in school and Ben working (Ben did take Monday and Tues off, to help my parents as Great Mims had just come to stay with them for 3 months and would have been totally overcome by care-taking of Great Mims in a wheelchair and 3 young children all at once). So on Wednesday, the first day the kids had with my parents, I asked my mom how Ezri had done, wondering what my mom was thinking of the effects of the new medication. It was a noticeably difficult day for Ezri she thought. Later that day Ezri and I were in the car alone coming back from OT and PT (the PT noted that it was the worst day he'd had with her as well, though OT had been pretty average) and I started trying to talk to her about the new medication. I tried my best to explain to her that some seizure medications work for some people and not for others and vice versa which was why we needed to try out various ones and how the Keppra she took was really good at stopping the staring seizures she has and that's why she took that. I asked her how the new pill made her feel? and she just frowned the saddest face you've ever seen in the rearview mirror, but didn't say a thing or even cry. I know it was her seizurey-sad feeling and she was holding it back and I also know it was triggered by me asking the question which she couldn't even answer being so overcome by feeling so sad. So then I asked her if she thought she felt 'fussier' and things 'bothered her too much' when she took the pill. Again I got that super sad face, but she nodded her head in answer. I think that was the deciding point for me: no more potiga. And I rationalized further by the fact that the only 2 medications that have ever worked for Ezri have worked miracles from the very first day. Today was the first day off of the Potiga and at one point in the afternoon I called my parents house and was talking to my mom. I forget that I'm usually on speaker phone and that the kids can often hear me,and I asked if Ezri was having a 'good day today'? very curious about the effects of stopping the medication (the morning at home had already been noticeably better). The next thing I hear is Ezri's sweet and very happy little 6 year old voice saying in the background "yes Mommy I am!"

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