Monday night was a really rough night.  Eve was up at 8:30pm in intense pain.  Her knees were drawn up to her chest, her fists were clenched and her arms with tight at her sides with elbows bent.  She was crying out and having lots of tongue thrusts.  When Jim picked her up, it was like picking up a stone statue - she didn't move.  It was too early for more valium, so we didn't know what to do.  I called the Pediatric Palliative care program and the VNA sent a nurse out.  This pain episode lasted about 10 minutes before she finally relaxed.  The nurse checked her vitals and we talked to the pediatrician on call.  He wanted us to consider going to Baystate, but left the decision up to us.  While the nurse was there, Eve had a second episode, but it wasn't as bad as the first and only lasted 2-3 minutes.  When the nurse left, I packed a bag just in case things didn't get any better and figured I'd give Eve valium when she was due (11pm).  At 10:45, she woke up with another episode.  I gave her the Valium a little early and she relaxed after that and slept the rest of the night. 

I put in a call to the neurologist yesterday to talk about it.  It turns out there is a neuro on call 24/7.  Next time I will remember that.  Anyhow, the doctor told me that people on Valium can develop a tolerance.  He's been very conservative with her dose, and told me to keep the dose as it is and to give her an additional 1ml if needed in a situation like that.  If it keeps happening, we can talk about changing her maintenance dose.  We have a long way to go before we reach her max dosage for her size.  Right now she gets less than a third of the max dose.  Keeping her comfortable is a common objective.