We started giving William Baclofen last Thursday. This is a drug to help reduce his spasticity. We are ramping up the dosage from 2.5mg a day to 7.5mg a day over the span of three weeks. My goal in starting this treatment is to help him have more use of his hands.
It has only been a few days on a very low dose but I am being asked if I see a difference at all yet. My husband says he sees no difference. But I think I do.
He, by no means, is grabbing or playing with toys. But I think he is able to get his arms out of his super stiff extension more. He is bending ever so slightly at the elbow now in order to grab my hair when I eat his belly. (nothing like hypertonic grip on the hair!)
Another change that I didn't expect is that his mood has improved dramatically, especially 30 minutes or so after his dose. Why? I'm not sure. I'm thinking that part of his crying and crankiness was due to discomfort in his muscles. Perhaps the spasms and hypertonia are quite uncomfortable. I don't know anyone with moderate/severe hypertonia to ask about this.
Also, he is vocalizing a lot more. Is it because of his improved mood or because of decreased spasticity in his mouth??? I guess I'll never know.
So far, I am not seeing any extra floppiness in his trunk or neck. I'm hoping I don't since he has a hard time with head control as it is.
So that is what is up with the Baclofen. I am hoping that with our next dosage increase, he will gain more function of his arms... keep your fingers crossed for him!
7 comments:
Wishing you the best! Baclofen is great for those who respond to it and so I hope that William does well. Crew has been on it for just a year. He takes 7.5 mg twice a day, which is considered low, and started out on a very very low dose. Best of luck to you:)
I hope it works for him Lisa!
What a cutie :)
Sounds like progress to me. I made Fletcher's appointment with the orthopedic surgeon (who seems to be the one that will prescribe the baclofen or botox or whatever he will need) but he can't get me in until mid-November, so after that we might be able to compare notes!
Jack had a very similar reaction to baclofen. I never noticed an overnight improvement but I did notice little things here and there which sometimes add up to be bigger things, you know! So now Jack's been on baclofen for a few years and with a recent increase he's gained more "mileage" out of his walker! So it was never something that just hit me over the head, but subtle differences. He is SOOOO CUTE btw!!
I am glad you notice improvement! He is so cute!
Lisa,
I came across your blog by chance. Our baby, Caleigh, was diagnosed with PVL on Friday. William's accomplishments are great to read about. Your children are beautiful!
Thanks for the hope!
Holly
www.hollydgray.blogspot.com
Just wanted to let you know that Brodie had a similiar situation about the crankiness. He was never just REAL cranky but after being on the baclofen I really begin to notice just how cranky he was before. We took 10mg tabs 4 times a day before we had SDR done. Just thought I would let you know that yes it will help their moods simply because it is painful~ we had a doctor tell us to think about us having a leg cramp all the time in our hole leg. Anyway hope you see an improvement.
Post a Comment