When she can't tell you what hurts

It's a new year and time to re-start this blog.

Spent much of the day at Children's Hospital trying to figure out what is causing HPEkid's latest bout of discomfort,  Since Friday night she has been in obvious distress. Saturday was the worst; she was uncomfortable in almost any position, but especially upright in her chair with back brace on. Her legs were shaking and tremoring almost constantly, especially on her left, and she was lifting and pumping the left leg (which normally she is pretty much unable to do). Her arms have been pulled back tightly at the shoulders and hands clenched.  Her face has been flushed and she is sweaty and hot, but not like a fever, just seems hot with being so tight and the effort of straining against her brace/chair.  Something feels different to me about putting on her brace, somehow the shape of her chest/ribs/hips feels different.  She sometimes laughs, almost manically, but then goes into a look of real concern/fear.  Little things set her off and seem to startle her.  Sometimes when lying on her back she will clutch at the air with her arms and vocalize, eyes large as though she's afraid of something. Her temperatue has been around 100.

 So today we got in to see Dr. S. who manages her spasticity. One of the first suspects when she is so uncomfortable and tight is that her baclofen pump may be malfunctioning and she could be in baclofen withdrawal.  Dr. S. manipulated HPEkid's legs and while she grimaced a few times, she also laughed often, but was clearly not herself.  Clearly her left leg and side were causing more discomfort than her right.  He ordered a series of x-rays to assess the pump connections and to look at her left hip, knee and leg. And he programmed her pump to deliver a high dose bolus, a quick shot of baclofen so we could watch for some response to further indicate whather the pump is functioning properly.  While waiting for x-rays, I felt it was pretty clear that the baclofen bolus worked - her tremoring diminished and she was sitting much more comfortably for the 2 hours we were there. Everything looked OK on the x-rays.  Pump and all tubing was connected and in place. Hip and pelvis all looked unchanged from other recent scnas she has had.  So we are fairly confident there is no pump or acute orthopedic issue.  The one thing noted on the x-ray was that her colon is quite full and she may be constipated. So for now we are going with the constipation theory. We will go in on Wednesday to her PCP to rule out any other underlying illness or signs of infection.

It is so maddening and frustrating as a parent, when you know your kid is in pain and just "not right" but cannot tell what is wrong.  And it must be doubly frustrating for her to not be able to tell us where it hurts.