Baclofen 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.
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.
See previous poll answers here.
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.
- Baclofen: So Far, So Good (July 1, 2011, ryansrally.org)
- Baclofen Pump Refill Today (June 30, 2011, ryansrally.org)
- Gallery Upgraded (ryansrally.org)