One step forward, fifteen steps back

It's ridiculous how quickly our last, generally positive post became outdated. Christmas night was spent in the emergency room, after B's whole system freaked out, bringing on dizziness, blurry vision, and an inability to swallow. We (and her doctor) thought she might be having an allergic reaction to the new muscle relaxant she'd taken, so we rushed her to the hospital. As it turned out, it was not an allergic reaction, but a stress reaction—her body overreacted to the pain of the 2-and-a-half-hour-long muscle spasm she was having. So we were back home—at 2AM—with B stabilized. For the moment.

We'd hoped that maybe that was rock bottom, but it wasn't. After a particularly grueling PT session yesterday morning, B came home and took a nap. She woke up unable to move anything below her neck without extreme pain. Her right leg—the center of her RSD affliction—was suddenly the least painful part of her body. It was excruciating to bend her left leg. Her lower back ached too much for her to sit upright. Her elbows were so painful that she couldn't bring a cup of water to her lips to drink. Turning her head was agony. Noelle and I spent the better part of the day making emergency calls. We called every medical professional she had seen so far, and a few she hadn't even seen yet. A couple of them eventually called us back.

Turns out B is having an RSD flare-up, a total nervous system freakout that can be triggered when she is overtaxed either physically or emotionally. As one blessedly clear-spoken doctor reiterated to me, RSD is a neurological disorder—all the extreme pain comes from her nervous system misfiring. And it's that same nervous system that controls a body's stress and anxiety levels. The disease creates a vicious cycle (one that feels particularly cruel for young kids), in which pain creates stress, which in turn creates more pain, which increases the stress, which pumps up the pain levels, and so on. (So much for Schoolhouse Rock: "Every body understands those telegraph commands.")

Lesson learned from today's horrific experience: We can't beat this thing without treating both the physical and the emotional/psychological sides of it. Another lesson learned: We can't beat this thing on our own. We need to look into inpatient treatment.

We've been hearing for weeks—from doctors, PTs, parents of other kids with RSD—that the best surefire way to beat this disease is by enrolling in a very specialized, long-term, inpatient program with hours and hours of daily intensive physical therapy coupled with psychological counseling. There are a very few of these programs in the nation—and only one in our state. But as much as we've tried to avoid mentally going to that place, we've come to realize that we cannot fix this at home.

We've already begun making calls and have quickly realized that the logistical, red-tape challenge of getting into any of these programs will end up being the frustration icing on the crap-cake that is our life right now. They all have long waiting lists. Some have a prerequisite number of outpatient PT sessions that a patient must complete before they're even eligible to apply. And who the hell knows whether our insurance will even cover it. We've only managed to get an evaluation appointment at one so far—and that's not for several weeks yet. In the meantime, I hope and pray that B will wake up this morning with her system calm enough to let her get out of bed.