Thursday, May 07, 2009

To Baclofen or Not to Baclofen

For people with serious spastic issues, there is one drug out there that's been used for years: Baclofen. We've always known about Baclofen and had several conversations with doctors about it, but we've been reluctant to try it because of the side effects. While it does wonders for spasiticity, if taken orally it affects the whole body, including personality and alertness. It also affects the low-tone areas of a body that DO NOT need a relaxant (like Clayton's trunk). But considering Clayton's tone in his legs is getting worse and worse, we've been searching for alternatives and additions to just the Botox treatments. (This last Botox treatment didn't seem to work at all, but it's being attributed to his growth spurt over the past few months). So after a long talk with one of Clayton's neurologists, we decided to try a very low dose. But it turned out to be so low we didn't notice any changes in his tone, let alone his personality. When we saw the nurse practitioner the next week (who does his Botox injections), she told us we would definitely have to double the dose to see any effect. So we did. The bad news: Clayton was EXTREMELY emotional for the first couple of days. The good news: his P.T. reported he was much looser during his stretching exercises, and didn't seem as distracted as he normally is. And when we talked to his teacher that same day, she reported that Clayton had finally colored all by himself. She said the same thing Hannah said: "he wasn't as distracted as he normally is and actually picked up the markers on his own and colored the duck." This in itself is a feat simply because Clayton never shows an interest in coloring even with help, much less all by himself. The verdict: maybe his personality will be affected but in a positive way! (Well, except for those emotional meltdowns he's had!! Let's hope those were just temporary!) We're just going to keep watching and waiting--we're really hoping that the combination of the Baclofen with his next round of Botox helps to loosen up those legs even more. Clayton wants to walk so bad, but his little legs get so twisted and tight that he just can't get it coordinated. It's so frustrating to watch him fight his legs knowing he could do it if we could just get these couple of issues out of the way! So here's to praying for a change in the tone and scissoring of his legs over the next months and year!


Patti H said...

OH Ashley you know we will all have our fingers crossed for our Clayton!! You two are the best parents Clayton could ever ask for. Hugs to you all!!

rosebud said...

We are praying that the new medication will work wonders!

Yankee said...

Sending healing thoughts that this will do it.