It’s only nine days since I last decreased Ryan’s dosage. This will be his second reduction in three weeks. Aggressive, yes, but well thought out. In just a few hours he will be at (or around) 225 micrograms (mcg) per day. This is roughly a 14% reduction from his current level, which is huge. Ten percent is considered the benchmark maximum decrease in most circumstances.
Yes, it’s a risk. It always is. The next few days will be tense as I watch for signs of distress (and awareness). But there is an ever-moving equilibrium between alertness and comfort that I am hell-bent on determining for Ryan. Unless, that is, Ryan has no cognitive awareness at any level. I’d rather not think about that right now… or ever, for that matter.
The process of changing the dosage rate is completely non-invasive. A nurse (or doctor) will place a wireless sensor over the pump site that, in turn, communicates with the pump’s computer. This sensor is wired to a hand-held unit (about the size of a paperback book; see photo on left) that is used to reprogram the pump. The benefit of an internal system is that the drug does not cross the blood-brain barrier, with delivery right into the brain. If taken orally, he would need so many pills to even come close to the infusion method that it would be impractical.
It’s no more difficult to use this device than an app on any smartphone. Really, most anyone could do this themselves with a quick one-hour lesson. If it weren’t illegal to own/use one without a license, I’m sure I’d already have the unit. I suppose it’s not so much about knowing how to use the equipment as it is safely changing dosage.
This might be aiming too high, but I’ve already penciled in November 22nd for another dosage decrease. I’m shooting for another huge reduction that will take Ryan to around 200 mcg daily. Beyond this, I probably won’t do much before the holiday season. I have December 26th blocked out. Who knows, maybe Ryan will ring in 2012 at a rate of 180 or so?
- Ryan began the year at 425 mcg/day (or 17.708 mcg/hour)
- Ryan is now at 225 mcg/day (or 9.375 mcg/hour)
- So far this year, this is an absolute decrease of 200 mcg/day (or 8.333/hour)
- So far this year, this is a net decrease of 47.1%.
- Today: Baclofen Reduction Again (ryansrally.org)
- Baclofen Reduction Today (ryansrally.org)
- Baclofen Reduced. UTI Found. (ryansrally.org)
- Baclofen: So Far, So Good (ryansrally.org)
- Baclofen Reduction Scheduled (ryansrally.org)
- Update: Baclofen, YGR!, UTI, Rash, Store, Sleep Study (ryansrally.org)
“A miracle in slow motion!” Yes, and happening now. Always wishing you peace, praying constantly for Ryan’s miracle and thanking God for Ryan’s good health and yours, too, Ken. Love
The Colangelis says
To-date reduction of 47% is amazing. Good work Ken in monitoring Ryan through each reduction. Praying to God to help Ryan and you.
nancy tawney says
Hope all goes well! Still here still praying!
Awesome news, Ken.
Remember what Cam said about Ryan in the beginning of all this : He’s like a miracle in slow motion!
Here’s to speeding up Ryan’s miracle just a wee little bit!
Hoping and Praying for success and a positive response!
Gail Doyle says
Ken, Praying for new reduction to work as planned .It’s amazing the amount Baclofen has been reduced and Ryan is doing so well ..Now for him to start responding a little, is all our hope. Cannot begin to imagine more stress on you ,but it will work . Here for you all always Love Gail
Go for it Ken. You’ll never know how much Ryan can progress unless you can be brave enough to do it. Here’s a question for your expertise; How does the dosage Ryan now gets compare with the “may produce drowsiness” basic side effect of a “normal or maintenance” dose of Baclofen for something like muscle spasms, back pain, etc? Is it a lot higher than that?
Not sure how to answer that exactly, other than he is now on an “average” dosage.
I wasn’t sure how to ask it either ; ) I didn’t know what it was, so looked it up before. Those increments were listed differently, so totally lost me in comparison to Ryan’s dosage. Hope he continues to respond favorably to the decreases and you begin to see more alertness as it slowly wears off and out of his system.
Milissa Simonsen says
My ex-hubby with a severe TBI is on 80 mcg per day. His accident was 4 years ago, and the neurologist told me that this is a pretty “common” dosage. He is alert and awake (was in a coma for about 3 months). He is awake as much as anyone else during the day. I hope this helps.
Milissa Simonsen says
Also, he was on much higher dosages of Baclofen a couple of years ago, and he was awake while we reduced the dosage. I kept thinking that there would be severe consequences or pain after reductions, but there were never any. Anything under 80 mcg makes him tight and he has spasms. The drug that really made a difference was “Seroquil” (not sure if I spelled it right). When I weined him off it, he became so much more aware and his hallucinations stopped. We also stopped the gabopentin (not sure if I remember that one right either) with no adverse effects. Anyway, every TBI is different, but he wasn’t even supposed to wake up according to the doctors. Good luck with the reduction.
Carla Liberty says
Milissa, did the gabopentin make your hubby tired? If I’m not mistaken that is a pill to help with pain involving your nerve endings. I was on that when I had 3 ruptured discs (before my surgery)….It made me extremely tired, and very, very loopy. Ken, is Ryan on this?
Gabopentin did seem to make him sleepy.
My prayers continue for Ryan to adjust smoothly to this change, and for him to become more alert in the process.
Just wondering whether there are other sedating drugs Ryan is taking that could also possibly be adjusted.
I know your big challenge here is to evaluate potential problems verses gains (increased alertness). Praying for guidance and courage about this. I know you’re watching him every second, and this has to be emotionally draining. I pray for continued strength for you, Ken.
Thinking of you and Ryan, and sending love and hugs. I feel so much hope!
Ms. Blasé says
This is really great news… I have to admit, however, that I’m looking forward to the day when Ryan doesn’t need baclofen at all.
Carla Liberty says
We truly believe that this (and future) reductions are going to be key to Ryan’s improved cognitive awareness. As always, Ken, your strength and fortitude is unmatched. Still here, NGA, RKD, FTW <3
We are praying that Ryan responds well to today’s reduction. We know that you’re staying on top of everything and keep you in prayer for continued wisdom and endurance in caring for your precious son <3