Saturday, March 12, 2016

Sleepy during the day but not at night

So Reagan did FINALLY sleep in her bed last night. That is, until 4am or so. I woke up around 4:30am and found her in the middle of her bed, completely uncovered. I changed her diaper and covered her back up and went back to sleep, but when I got up at 6:45am to run I found her again uncovered and halfway down her bed! I changed her again and then moved her to her chair. So I think she slept some, but at least she spent most of the night in her bed...asleep or awake! She's been super sweet today. Very calm, still a little crunchy and into her hands, but maybe a little more relaxed. This morning we did see another one of the "seizure-like episodes". This time it was actually triggered by me wiping at her eyes. She had some sleep in her eyes and when I went to wipe it away, she startled a little and then started blinking and turned her head/eyes up and to the left (and maybe stiffened out her arms/legs a little). It lasted maybe less than a minute with me constantly trying to break her out of it. Both the nurse working and the nurse orienting today saw it, so at least they know what to look for. Not happy about this. I've already got a call into the neurologist, but if it is in fact the switch in manufacturers of her clobazam...there's not much we can do at this point. The Canadian APO-clobazam is still on back order until the end of April (and we're almost completely out of it). This is the reason after 6yrs of seizure control we have never wanted to mess with her seizure medications (many people wean off of them after a few years of seizure freedom). Eventually she got sleepy again, maybe an hour or so after this so I don't think it was's more likely to have been related to her being up since 4am! She slept off and on for most of the day and then woke back up around 6pm raring to go! She's really been fighting sleep lately at night. Even if she dozes off downstairs, when we try moving her to her bed, she becomes super vocal and starts kicking/flailing! We're so scared of using clonidine and having her freak out even more, but at this point she just really needs some sleep! Ugh. What to do. Really hoping she sleeps tonight.

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