Monday, March 27, 2017

Neuro appt and spunky girl

Reagan was up and spunky this morning. She was in a good mood, super smiley, but still very tense and crunchy in her body and no pee. Thankfully she went with the help of some warm water (she actually only went 3x today and only with the warm water method). We had an early morning appt with her neurologist, so we loaded up into the car, dropped Ryan at school and headed in to town. Reagan was chewing on her hand a lot, but there wasn't much we could do about that in the car. Once we got to the drs office, we tried wrapping a blanket around it and that's when we noticed blood. We couldn't really tell where it was coming from. We weren't sure if she bit her lip, or cheek or what. We did our best to keep it out of her mouth the rest of our time there. I spoke to her neurologist about our concerns with her increase in tone and the breakthrough seizures we've been seeing. He's hesitant to make any big medication changes since we know most of this is probably due to her fluctuating hormones. He did suggest going up a tiny bit on her clobazam. She's been on 5mg am/10mg pm for years now which is apparently a pretty low dose. So we're going to try increasing the morning dose up to 10mg as well and see if that helps at all. Not a lot of options. We also discussed medical marijuana and while she doesn't fit the requirements to take it for her seizures (right now they're primarily using to treat drop seizures in Lennox Gastaut patients), he thinks it's something that might really be helpful with her pain/high tone. He's going to consult with her PM&R doctor to see if there are any studies being conducted that she might qualify for. She was a little stressed during the appointment, but she did better once we put her noise cancelling headphones on. She was still pretty kooky/crunchy and putting her hands in her mouth on our drive home. Once home, we looked more closely at her mouth and I thought I saw a possible loose tooth. 15min later, her nurse found a tooth laying on her pillow (her bottom left first molar)! Ha! We didn't even know she had a loose tooth! And in her gums I can see the tiniest hint of her new tooth! Of course, losing a tooth isn't the best time to have your hands in your mouth nonstop (and can cause a lot of bleeding)! Her nurse wrestled with her all afternoon trying to keep them out of her mouth! Reagan probably won that battle. Tonight I put on her heavy duty arm restraints to try to give that mouth a rest. She was super smiley, but fighting me and trying to squirm out of those restraints every chance she got! Tricky little girl. Now we just have to get her spunky butt to sleep!






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