Each case of Cerebral Palsy is different but there always seems to be “fads” that go around, as with anything; whether it be SDR or some other surgical option to Baclofen and Botox.
I’m going to say something that’s not that popular.
What works for one child may not work for your child and that’s OK.
It’s not some kind of medical competition to see who gets the most out of whatever treatment. I know it can feel like it, because it doesn’t stop once your child grows up.
I’ll give you an example, I was late to the party when it came to Botox injections. I didn’t like the idea that I’d have to keep getting them every 6-ish months or so. Everyone tried to talk me into getting them, so much so that my expectations were high, but manageable. Botox doesn’t work for me in the traditional sense, which is both good and bad.
I’m not on any type of regular schedule for Botox injections like most people with Cerebral Palsy who get them, but I get them at least once a year when my muscles get so tight, I don’t have any other options. It’s not the magic bullet that it can be for some people, but it does help me get back to my normal.
Another example is Baclofen, it’s one of the worst medications I’ve ever been on, in my opinion. I did a basic 2-week trial on the lowest dose possible and it ended up being one of the longest periods of my life. Granted it isn’t nearly as bad as some other have had it, but it was an experience I kind of wish I never had. Like the Botox, it didn’t work the way we had hoped.
Now, the one thing that makes my experience with Baclofen different than my experience with Botox is that it was more like a “let’s see what happens” venture. I was warned about the side effects and that it was going to be a process before it would actually work, if it did.
It did work, but too well, so in a sense it didn’t work either. My legs felt more “normal” but the rest of me was one big pile of mush. So that experiment ended quickly but the withdrawal was the worst part. Because yes you can go through withdrawal after just two weeks.
Now that I’ve given you two bad examples, I should give you a good example, trigger point injections work really well for me. Think of it like Botox injections without the Botox. I’m also partial to Myofascial Release. So, I try to get both of those as often as I can, because it’s cheaper than Botox and doesn’t always require insurance.
What am I trying to say with all of this?
Get as much information, both medical and personal about treatment options but manage your expectations. Just because it worked for another child (or adult) that doesn’t mean it will have the same outcome for your child (or you).
Cerebral Palsy is unique to the individual, the treatment(s) should be too.