More pain for Eve

For the past several weeks Eve has been showing signs of discomfort in increasing frequency and intensity.  In the mornings or late afternoon (around 5pm) she sometimes just looks super uncomfortable.  One knee will be drawn into her chest and her elbows will be bent with her arms rigid.  If you move her leg or arms, her arms will tremor.  I may have mentioned she no longer is able to cry.  Instead, she laughs when she is in pain.  It's a different sounding laugh than her funny laugh.  There is a sharpness, or an edge to the pain laugh.  She sometimes does this during these episodes. 

Around Christmas, I mentioned to her neuro that we've been having to give her more booster doses of Valium for break-through pain.  So, he increased her dose.  Even after the increase, she's still been having these episodes.  We've even had to give her morphine twice.  So, Jim and I decided to switch up her med schedule.  She's allowed the Valium every 4 hours with booster doses every 2 in between.  We were giving the schedule doses at 8am, 12:30pm, and then not again until before bedtime at 6:30pm.  We've started giving her the Valium at 5pm now (and not again at bedtime).  That seems to help a bit in the afternoon.  However, it doesn't help in the morning.  This past week, the nurse had to give her a booster dose at school.  Then, on Wednesday at lunchtime, Eve had a bad episode.  Not only what she showing signs of pain, but she was moaning and had both knees drawn into her chest.  This is what used to happen a year ago (and is why the morphine was prescribed), and she had never done this at school before.  I thought we had gotten past these intense episodes.  We see the neuro in a week and half, and I'll talk to him about our options and what we can do to ensure she is comfortable.

One other thing I need to talk to the neuro about is that she might have had two quick seizures yesterday at school.  Eve had a substitute one-on-one, and she brought Eve to the nurse's office.  She said that Eve's arms had started to tremor and that Eve rolled her eyes back into her head for about three seconds.  Then it happened again for another few seconds.  I've never seen this at home, but I suppose it is possible.  I thought the nurse gave the one-on-one excellent advice:  if it happens again, stroke Eve's cheek - if she snaps out of it, it wasn't a seizure.  Whatever happened, it was strange enough that the one-on-one brought Eve to the nurse.  So, I'll mention this to the doctor.