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ToastieSimons
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We always miss brag day!!! (AW'ing inside)
ToastieSimons
member
After Botox and consulting with the physiatrist we agreed to take a Baclofen break to see if it was really helping him.
Last week he did meh at therapy. He did take some steps in the gait trainer but basically was crabby and noncompliant. So we started the Baclofen again.
Today...
He stood all by himself at a bench for about 20 seconds. He pushed that gait trainer through the entire therapy room and out into the hallway.
To my boys: I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
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Re: We always miss brag day!!! (AW'ing inside)
Yay!!! Good for him.
Awesome!
So do you think you are going to continue on the baclofen then?
We have a script that the SB/CP clinic gave us in January but never really filled it bc 2 of her other dr's said they didn't think it would help.
yep we started it again friday. It's funny that your doctors don't think it would help. DS has severe hypertonia. he wasn't sleeping AT ALL and just screaming day and night. I really felt that he was having spasms or charlie horses at night from his muscles being so tight. The neurologist FOUGHT us on it and finally gave in warning us "It's not going to work, he cries because you don't make him CIO (he was 7 months)". The first night he slept in 3 hour stretches (before that it had been 30 minute stretches at most).
Our physiatrist backed us with giving him baclofen and increased his does to 3x/day. When we went in for this last Botox treatment I mentioned we weren't seeing an improvement like we were before and he was all for us giving it a trial break. His words were "With the way he moves I would never have prescribed him Baclofen now. He doesn't look like a kid who needs it."
So we stopped, and it's very clear it does make a big difference in him. He's overall happier, much more flexible and willing to be adapted. We had him on the treadmill (in a gait trainer) last week and our PT was literally having to use her own strength to move each of his legs into stepping motion. This week, either he took the steps on his own or she barely had to tickle his leg to stimulate him to move it.