Today started off well enough. Reagan slept straight through til 6:30 or so. She did wake up fussy but she went back to sleep and I woke her right before we had to leave for therapy and she seemed fine. She made it about 3/4 of the way through her Feldenkrais/ABM session and then our day fell apart. The tummy pains strike again! We moved her around trying to work it out and we were successful in our efforts. I thought that would ease the pain, but no. She cried the whole drive home, she cried at home, she cried in my lap, on the floor, in her bed, she cried non-stop for over 7hrs! Seriously...every waking second she was crying. The horrible gut wrenching crying, her eyes were all red and puffed up, she couldn't even catch her breath, it was relentless. Is it me or is this just ridiculous? Why should she suffer with such pain!?! There has GOT to be something that could help her! And then to top it all off, she had several of the bigger myo-tonic seizures. It was horrible. Finally she took a nap this afternoon and woke feeling loads better. Thank God. I did finally hear back from the neurologist today. He said that we can try going up a little more on the Clobazam (7.5mg for the am dose) and we can continue with weaning her off the Keppra. That sounds good to me. She's on way too many medications to still be having so many seizures. Please keep her in your prayers. She needs a break this weekend!
This was only the first hour of crying, but it pretty much sums up our day. How sad is this?