First some background. Ollie's legs have been tight since shortly after his diagnosis. To combat this he was put on a medicine called Baclofen which was supposed to make his legs limp. This medicine may have relaxed him a bit but it has never been fully effective. We've increased his dose over time to try to keep up with the increased tightness but we are always reacting to his discomfort rather than preventing it. Recently, his neurologist said he was hesitant to continue increasing his muscle relaxer because over time it's effectiveness decreases dramatically and it acts as a sedative. As an alternative, he mentioned Botox as a way to decrease the spasticity in his legs for a good amount of time without the sedation.
We were really excited about this alternative but knew that it could take weeks to get in to see the specialist who performs the procedure. We had an appointment with this specialist scheduled for Sept 13th but we thought this would only be a consultation and that the actual treatment would have to be scheduled a few weeks later. In the middle of last week the doctor called me and said he would do the consultation over the phone and order the medicine that day. We could schedule the actual procedure on the 13th and if medicine arrived earlier we could make a special appointment even sooner. We got a call on Friday saying that the medicine was being shipped and should arrive at the doctor early this week. Sure enough, the phone rang this morning and the secretary offered us a time slot at 8:30 tomorrow morning. We are going to have to put off his fitting for his wheelchair but this definitely takes precedence.
So we're heading to Danbury tomorrow to get the procedure done. According to the Mayo Clinic website, the procedure will "block certain chemical signals from nerves, mostly signals that cause muscles to contract. This results in targeted muscle paralysis, which can have therapeutic or cosmetic effects, especially where muscles are chronically tight or spastic." The only downside is that the muscles will eventually reestablish these connections so the treatment needs to be repeated every 3-6 months. It's quite a mild downside considering it may give Ollie 3 months of comfort. I think we'd have the treatment even if it had to be repeated weekly!
We're so excited at the prospect that Ollie may be comfortable for the first time in months. We've always been unsure if the tightness in his muscles made him upset or if his being upset caused his muscles to tense. We're hoping that this procedure will take some stress off his little body and let him relax. We're also hoping we have many more smiles in the near future.
-Posted by Chris