Ryan’s at it again today. He is getting another reduction to his baclofen dosage early this morning. This one comes just fifteen days since the last in late-December. I continue to push the limits with an aggressive schedule; by incrementally taking the daily volume down by 12.9%, from 155 mcg to 135 mcg. Of note, last year at this time he was at 400 mcg (being just reduced from 425 mcg).
Baclofen (BAK loe fen) – Baclofen is an extremely powerful muscle relaxer and an anti-spastic agent. It is used to treat muscle symptoms, including spasm, pain, and stiffness. Baclofen can severely impair thinking and/or reactions.
<via sci.washington.edu>
For new readers to this site (and as a refresher to others), Ryan has a surgically implanted pump — about the size of a hockey puck — in his abdomen. It continuously delivers baclofen directly into his spinal column. This method, as opposed to oral/g-tube ingestion, is the most consistent and effective means of delivering the drug since it doesn’t cross the blood-brain barrier. The spinal fluid carries it directly to the brain.
So, it’s the same old story. I’ll closely monitor him over the next seventy-hours for negative effects from the reduction. Meanwhile, I’ll also be watching for signs of increased alertness (or, even better, awareness). It’s always a stressful few days. Especially the first twenty-four hours.
Next Step: If Ryan tolerates today’s reduction well, my plan is to take him down at least 15 mcg next time. This is likely to happen in two or three weeks. I might even go to 115 mcg, thus reducing by 20 mcg.
To me, getting him to 100 mcg is a huge milestone, second only to weaning him completely.
Prayers & Love & Still believing in Ryan’s healing!!
Thinking of you and your family
Paula
Good for Ray! I remember going to a men’s soccer game their freshman year parents weekend and all the Tower kids sat down in the front and cheered their friends/hallmates on. Hope Ryan does well with the reduction and you get some rest tonite. From the last post it sounds like it’s just the boys and dogs home, with Sue out of town and Kari back at school. Looking forward to some tales…..
Thinking of you all Ken and hoping this baclofen reduction does bring Ryan more awareness, although I think he is more aware than we all imagine and that’s why he always works so hard. Please tell him today that his good buddy Ray Gaddis went in the 2nd round of the MLS draft to the Philadelphia Union. I know Ryan will be proud of Ray because he knows how hard Ray has worked to get to this spot. Ryan is one of Ray’s biggest fans – he and Charlie and their gang from Brooke Tower (freshman dorm) attending all the soccer games they could at WVU to cheer Ray on all these years! Love to you all. Keep us posted over the next few days. We love you Ryan!!
Ken, Hoping this reduction brings awareness to Ryan.You have been amazing in your care for Ryan (,of course Sue too) and just know he will improve .We’re rooting for you all Love Gail
Ken, you are providing the best possible care for trying. Keep trusting your gut. Your instincts continue to serve Ryan well. Praying all continues well with the further reduction and praying for peace within you as you continue to endure….
Much love, Peggie
I have peace in my heart “knowing” that RYAN could not be in better hands. That each and every decision you’ve made and will continue to make, provides Ryan ONE MORE opportunity (that he may not have had with someone else monitoring his care) to come back to you.
I know that your decisions are far from EASY and cause you a tremendous amount of stress, but, from where I sit, I say “Keep on, keeping on”. I feel deep within my heart that you, “Dr. Diviney” are headed in the right direction.
In the meantime, I will continue to hold each of you up in prayer. I am specifically asking that GOD continues to provide your RYAN and each of you, with the strength you need to always push forward- bringing your Ryan and your family closer to complete healing.
With love and in prayer… always, forever and until,
Keri, My Frankie and Family
Still praying for “your” Frankie too Keri. And your messages to Ryan and Ken are so heartwarming ,even though you are suffering too..Prayers all around!!
Hoping and praying that this reduction goes as well as the others.
How is the rash on Ryan’s backside? Does he get dairy in the mix or only calcium? I just read about milk allergy. The photo looked similar to Ryan’s rash. I was scrolling through rash/hives photos and wanted to send the link, but for some reason, couldn’t go back to it. I’ll keep looking.
Hope you sang along for your Suzy Q. 🙂
Always here. Love