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.
<via painphysicians.com>
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!
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Related articles
- Baclofen Reduction Scheduled (ryansrally.org)
- Baclofen Reduced. UTI Found. (ryansrally.org)
Praying that the reduction goes smootly. God bless you and your family.
Praying this latest reduction goes as well as the others. Love you, Ryan…stay strong young man.
Ken, Hoping reduction goes smoothly and Ryan does well with it .You do know what’s best for him, that’s for sure. Is he taking new medicine for UTI? And how is that doing? Praying you both have a peaceful calm day Hugs to Ryan. Love Gail
Without a doubt, Ken, you’re the man for the job. You always know what is best for Ryan, and can sense the even the slightest change in him, even when he might have UTIs. I hope this problem is resolved pronto, and that Ryan gets over it once and for all. I praying that the Baclofen can be reduced to the lowest possible dose in good time, so that Ryan will be more alert. We’ll be shouting in concert, Paula, that’s for sure! 🙂 LOVE
Hi Ken,
I am praying that Ryan won’t experience any stiffness or other issues resulting from reducing the Baclofen. He did so well the last time you reduced it, I’m hoping you will be able to keep reducing it. I’ve always wondered about the sedating effects of the various drugs Ryan takes. I know you are continually weighing out these decisions, always trying to make your best educated guess as to which path to take. You have obviously done an excellent job. Waiting for that day when Ryan communicates with you and Sue. You will hear me shouting from the rooftops about it!!
Hoping you and your wonderful son have a smooth day together. Please let us know how the UTI is responding to treatment.
Love & prayers, Paula
Hopefully, as a result of this reduction, Ryan’s activity and responsiveness will continue to increase 🙂