In the ongoing balance between alertness and comfort, I requested (and was granted) another reduction in the level of baclofen Ryan receives daily. This will happen today. The daily dosage will be reduced 9.5%, from 315 to 285 micrograms (mcg). The next seventy-two hours — particularly the next twenty-four — will be stressful as we closely monitor his tolerance and response to the reduction.
Baclofen is powerful drug that acts as a skeletal muscle relaxer and an anti-spastic agent. It reduces spasms, pain, and stiffness. The drawback is it makes people lethargic if dosed too highly. So, we are constantly trying to find the ever-changing equilibrium that meet both goals: pain/stiffness and alertness.
For Ryan, his pump is surgically implanted in his left abdomen and it routes the medicine via a catheter into his spinal column. This delivers the medicine up the spine and directly into the brain without needing to cross the blood-brain barrier, where the effect would be greatly diminished.
Ryan began the year receiving 425 mcg/day (or 17.7/hour). If this reduction is successful he will be weaned a remarkable 33% from then (11.9/hour). Remarkable. Our timetable targets the Thanksgiving week to potentially bring him down again. So far this year, he has tolerated at least a 9.5% reduction each time.
In a quasi “law of diminishing returns”, each subsequent 10% reduction means less absolute reduction. For example, the 10% reduction from 425 mcg is not equal to the 10% reduction from 325 mcg (42.5 vs. 32.5). So frustrating!