Baclofen Update

Things have been pretty crazy lately.  I hope to get back into a blogging routine now that schools back in session and hopefully the worst of winter has passed, I wouldn’t mind a few more snow days though.  A while back I wrote about our decision to put Dean on Baclofen.  It took a bit to get him up to the full dose but for about a month now he has been getting 1ml, twice a day.  We gradually introduced it because I was worried about the side effects.  I am happy to report we have not seen any side effects from the medicine. Tantrums have increased but apparently that’s because toddlers are crazy and nothing to do with the medicine.

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Without any side effects I haven’t really seen any downfall to the medicine but I also think we could still see some improvement.  He has really grown over the past month and it is so exciting to see.  We put him in gymnastics a few months ago.  We he first started he like to run in circles on the trampoline.  He also liked when someone else is on to jump him.  More recently he can now jump on his own.  Even another mother said “I can’t believe how much he has grown since the first class.”  He is also much more of a climber now.  Each week they have an obstacle course set up and each week I give him less and less assistance with it.  Because of the Baclophen he can actually reach with his right arm, sometimes it takes a reminder “get righty up there.” Now that he is able to reach righty can help in pulling himself up.

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In physical and occupational therapy, we are also seeing improvements.  With the Baclophen he seems to have more controlled movements with his right arm, so we are working on using it to assist him with things.  This is major improvement because he would typically just ignore it a lot of the time before.  We encourage him to try and hold things 2 handed or use righty to hold something against his chest so left can open it.  He also has great range with his leg, which I didn’t even really notice an issue with before.    He is also much more willing to weight bear through his hand now, which she said might be because it was painful before.  The med has truly loosed up his spasticity everywhere which could not happen with botox injections.

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As for where we can see improvement, I would still love to see his hand open more.  It is much more relaxed and at his side instead of tightened up in an L shape.  But his fingers are still tight a lot of the time, especially when he is trying to use it.  Our Occupational Therapist is going to make him a new night splint, he grew out of the old one.  We are also looking at a day time splint.  I love our Occupational Therapist but we differ on this.  She wants a day splint that won’t force his hand open so he can close it when grasping things.  I, on the other hand, feel like forcing it open would be better than how it is now and we can work on grasping once it is open.  I will keep you updated on what we decide and any further improvements we see.

One thought on “Baclofen Update

  1. This is thrilling to hear his progress. He is in the Trimble twos and much of what he displays is right for his age. Rooting for you,Ryan and Dean.

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