is a drug that is primarily used to treat muscle spasticity. In Ryan’s case, he has a pump implanted in his abdomen that delivers the drug into the spinal column via an internal catheter. The benefit of this delivery method (over oral/g-tube administration) is the drug does not cross the blood-brain barrier, making it much more effective. Other drugs, like morphine, could be added to the pump if needed.
- The baclofen pump and catheter shown against the human anatomy. <via maydayprdx.blogspot.com>
Baclofen, being a strong muscle relaxer, has a real potential to make the patient excessively lethargic. Therein lies the dilemma. What is the ideal dosage a person should receive to reduced spasticity, yet not over-sedate? Oh, and it gets even more complicated since this threshold is a moving target as the patient’s condition changes.
Ryan began the year receiving 425 mcg per day (or 17.7 mcg/hour), delivered at a constant rate. Before his discharge from ICU in January we had the rate decreased to 400 mcg/day (16.7 mcg/hour). Then, on July 1, we took him down an incredible 50 mcg to 350 mcg/day (14.6/hour). This was a huge decrease (12.5%) since the rule is to not adjust by more than 10% at a time. Still, my instincts told me he could handle it and, thankfully, he did.
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[poll id=”11″]See previous poll answers here.
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Tomorrow he is scheduled for another visit and I requested (and was granted) a decrease to 315 mcg/day (13.1 mcg/day). This is exactly 10%. It’s always a judgement call to lower the dosage. One I wish I never had to make. Clearly, we take this risk and will again tomorrow. It’s a calculated trade-off, but the greatest fear is Ryan will start the neurological storming again. Usually within 24 hours.
My hopes are high. If Ryan is able to tolerate this, he will have stepped down a full 25% in just eight-and-a-half months. Who knows, maybe his alertness will pick-up too?
The next scheduled visit is the day after Thanksgiving. My ambition is to decrease his dosage another 30 mcg at this time, but only time will tell.
Related articles
- Baclofen: So Far, So Good (July 1, 2011, ryansrally.org)
- Baclofen Pump Refill Today (June 30, 2011, ryansrally.org)
- Gallery Upgraded (ryansrally.org)
God “helps” you to make the right decision. I’ve always trusted in this.
Praying that all goes well, and that Ryan becomes more alert every day. One of these days, Ken… …I thank God every day, sometimes every hour, for Ryan’s continued healing. Always here with much hope. Love
Marcus Welby, MD.
Go for it! Remember “you’re da man”, your instincts are usually right on. How’s the new pad working out? Are you men getting used to it, trashing it up, does it smell like a guys place yet?? Got your Redskins flag up on the wall?
Hope Kari likes her first day of classes today, Jon went up on Friday and has a 9am class this morning. Had a job interview yesterday at one of the sports bars, hoping to get a job this year for a few hours. Enjoy this low humidity weather heard we might be getting a little rain from a hurricaine down south.
Your instincts have guided you in the right direction so far, keep on trusting yourself. I hope you all have a good day.
On-going prayers for Ryan, you and Sue–and for success in this reduction. I also pray for comfort and strength for all of you during this time. Still here. Keep on keeping on…Annie
Ken and Sue,
Continue to trust your instincts. You are very much in tune with Ryan and his needs. Praying all goes well with the reduction. You are doing a terrific job with Ryan’s care! I have faith in your being guided toward all of the best decisions when it comes to meeting Ryan’s needs.
Love, Peggie
Ken,
Like the ladies said before me, you definitely are the best judge when it comes to Ryan’s care. Praying for a smooth transition to the lowered dose, and praying for the enhanced alertness that could result. Sending love and hugs, Carla
Ken ,Praying reduction goes well and Ryan will have no problems. You’re the best judge on all concerning Ryan and he looks so good and healthy. Hope yesterday was a big success .I can’t imagine the stress on you and Sue ,but I feel in time (as Ryan has shown in past year) much ,much more improvement thanks to the wonderful care you both give him. Keep us posted on how it goes .Say hi to Ryan. love Gail
Will be praying for a PERFECT dosage reduction, no brain storming, and signs of additional alertness from Ryan. Cannot imagine anyone more in tune with this decision, Ken.