I was asked a question the other day that made me really think.. "Do you think the development we are seeing in Ayden is a result of arbaclofen or due to it just being time for him to have developmental leap?" My answer to this is a little of both. I think we started intervention at a time that was ideal for Ayden. The combination of proper therapy and teaching both at school and at home with the medication at a time when Ayden was beginning to show progress all contributes to the large jump we've seen. Given that, I'm very hopeful we do not see much regression as we begin to wean. (still no set date yet).
I'm overcome by the differences from last time we spent a weekend at my parent's house when it was warm. Ayden has been running around in the [wet] grass playing with my parents dog. Last evening he was actually playing with his brother - they were running around outside pretending to be in Mario Kart. He wasn't just following Issac, he was participating and having a wonderful time. I am enjoying these moments, praying they are here for good.
Just as I was sitting down to write this, Ayden asked me to watch a movie and cuddle up with his blanket. I was more than happy to allow it, but was more than surprised to have him ask for their dog to sit with him. He then proceeded to call Brody and try to get him to sit on the couch next to him, even moving to Brody's favorite spot. Their dog is more than amazing with Ayden, and I was able to get this picture quickly. For one who hasn't seen the trials we faced with Ayden being around dogs, this won't mean as much - but for those that have I do hope it warms your heart as much as it did mine this morning.
This is probably a dumb questions but if you have enough to last until August why are you not allowed to just continue and wean off at that point? Do you have to send the medication back? This all just sucks, I've been following it on your blog as well as a bunch of others you shared...hoping that its not as catastrophic as everyone is afraid it will be :(
ReplyDeleteI know that the sponsor (Seaside) has a date which they want everyone off the medication by. We do not legally have to send back the meds, but we are doing so. The short term benefit of keeping him on for a few more months (because the supply will run out) isn't worth the possibilitiy of repurcussions to our clinic site or doctor (both of whom are amazing). They are also the ones who are helping us find something else to work for him. It will also give us the summer to adjust medication with what we hope will be minimal impact in the fall for school.
DeleteAs for how bad it is, thankfully some families are not reporting much in the way of weaning issues, but I do know some that are. I've seen issues from sleep issues to meltdowns and definitely aggression. The weaning process in the blind portion of the trial was really difficult for us I know.