It’s less than two weeks since the last baclofen decrease (13 days, to be exact), but it’s going down another 10% again today at my request. Ryan is currently just under 285 (mcg) micrograms per days, so this will take him to 256… give or take a few mcg.
I feel it’s worth a try since the last reduction didn’t seem to touch him. That’s good, from the point he experienced no discomfort. Yet, it would be better if Ryan showed more alertness. And really, that outcome has become my benchmark for further reductions. Here are my self-imposed guidelines:
- No Discomfort/No Improved Alertness = Aggressively decrease further.
- No Discomfort/Increased Alertness = Moderately decrease further.
- Any Discomfort = Stop decreasing.
Remember, Ryan began the year at 425 mcg daily. We began reducing his infusion rate just before being discharged from ICU that had him in the hospital over last Christmas and New Years’. Today’s reduction will take him to roughly a 60% decrease so far this year. If all goes well, I’ll get at least one more 10% dosage change in by year’s end. It is entirely possible for Ryan to be around 230 mcg when we ring in the new year (for a total of 66% for the year).
In other news, Ryan no longer receives a blood thinner shot in his stomach each morning (it was stopped on Friday). He was on the lowest dose possible for his weight as an added measure to prevent clots from forming, but he has been bruising easily lately. He is so passively physically active too. Anyhow, this bruising is a likely sign that his blood is too thin. To be on the safe side and not miss some other cause, I’ve ordered blood work that measures his platelet count/coagulation.
- Baclofen Reduced. UTI Found. (ryansrally.org)
- Baclofen: So Far, So Good (ryansrally.org)
- Baclofen Reduction Scheduled (ryansrally.org)
- Baclofen Reduction Today (ryansrally.org)