This crazy life has been all consuming as of late. I've been trying to tackle an entire football team at once. I need to slow my roll and take on one opponent at a time. Please, bear with me while I gather my bearings and get back in the game.
Here's a reoccurring topic that constantly thwacks ravishly on my brain. Oral baclofen, friend of foe? It is a muscle relaxer intended to help treat spasticity in children with cerebral palsy. Logan started taking baclofen approximately two years ago and has been on the same exact dosage as when he started. So, what's my dilemma?
To start, there is little to no research on oral baclofen and how it effects children with cerebral palsy. When I seriously think about that, it is rather disturbing. How do I know if it's doing more damage than it is good? I don't. What I do know is this...
Logan has mixed tone. His trunk and arms are low tone, as in they are weak. While his legs are completely opposite. His legs are machines, as in they are strong but extremely tight. Hence the PERC lengthening surgery that I'm currently investigating (more to come later). So, if his upper extremities are weak as it is, it seems obvious he doesn't need any sort of muscle relaxer. Now, his legs need serious help (again, PERC). However, if he has been on baclofen all this time and his lower limbs are as horrendously tight as they are, then is the baclofen even working or relieving any spasticity?
Since the oral baclofen is dispersed throughout his body, it's hard to know exactly how much is getting into his spinal fluid (this is where it is suppose to go to be most effective). Say only a small percentage of the 40 mg he takes daily is going to his spinal fluid, where is the majority going to? How is this effecting the rest of his body? Is it hindering his trunk and arms from being stronger? Could his issue with dysphagia improve in the slightest? Is this causing even the tiniest bit of cognitive impairment cause it could be reaching his brain? What is the long term outcome of living on oral baclofen? These are just a few questions I have no answers to. No one can answer them.
As of right now, there doesn't appear to be any benefits for Logan on oral baclofen. He will be weaned off starting tomorrow. By day seven, he will not receive any more baclofen. Then it'll be a matter of a couple to few weeks before it leaves his system completely. Please, keep Logan in your thoughts and prayers for no ill side effects while this drug leaves his little body. These kind of decisions are never easy to make. I'm happy and terrified at the same time. I want this to be the right decision and feel that it is, but is it?