Neurology Update: Our New Friend Baclofen

At the beginning of June we had Stellan’s quarterly neurology appointment.   It ran much as they usually do, though this time they had genetics results (which are still really non-results and which I haven’t quite figured out how to write about just yet) and the nurse practitioner made some obnoxious comments, as she seems to do at every visit.

In fact, Quentin and I were considering that this might be our last visit to this particular practice. After all, I’ve been on a doctor firing spree and since another of Stellan’s key docs has just left for the midwest, we were thinking of moving his care to another hospital entirely.  Seemed like as good a time as any to shake things up.

But this time, we finally got something beyond the usual, “Well keep it up with the therapy, keep an eye out for seizures, and we’ll see you in three months.”

They asked, as they always do, how he’s sleeping.  And the answer, as it always is, was “not great.”  Stellan wakes up anywhere from once (we consider this a good night) to half a dozen times or more during the night.  And every time he wakes up screaming, his arms and legs pulled in, and every muscle in his little body completely tense.  We discovered a while back – no idea how – that we can get him to calm back down quite easily usually but just jiggling his legs a little, doing a bicycle motion, and eventually he relaxes and falls back to sleep.

There was a time where we thought the problem might be reflux, but we started giving him reflux medication and the screaming continued.  I became convinced that it was simply tension in his body.  Imagine if you couldn’t change position in bed all night long.  No turning over, no rolling around, just stuck however someone placed you in bed.  I know I’d get pretty mad too.

I’d suggested this to the neurologist before and the last time the nurse practitioner told us to just go back to the “Cry It Out” method, and he’d eventually learn to put himself back to sleep.  So we tried that again. He can’t.  He can’t even reach for his pacifier if it falls out of his mouth. How is he going to self-soothe? Stellan, we learned, is capable of crying very loudly for a very, very long period of time. “Crying It Out” is not an option.

At our last visit they asked once again about the sleeping and I said again that it wasn’t great.  They also expressed concern over the fact that Stellan tends to bend his arms, flexing certain muscles to the detriment of others, and may eventually get permanently “stuck” in certain positions, much like children with cerebral palsy tend to do.

And that is when – thank goodness – they suggested Baclofen, a muscle relaxer. You see, they’d been holding out because Stellan is a very strong seizure candidate and they didn’t want to give him something that might pose problems were he to have a seizure.  But, knock wood, we have now crossed the fifteen month point and Stellan has never had a seizure.  Let me just knock wood one more time for good measure. Apparently getting to the 12 month mark seizure-free was a really big deal, and each month we get past that milestone, even better.

So we started him on the Baclofen – a quarter of a pill each night.  Now in addition to feeling like a nurse I also feel like a sort of mad chemist, breaking up pills and mashing them and mixing them with water to get them into syringes. On good days that’s what I feel like, on very bad days I allow myself to be momentarily sad that we need to do all of this stuff that other people don’t have to do.

By the second or third night, we started noticing a major improvement in his sleeping. And a few nights later he was sleeping through the night almost every night.  In addition, there have been noticeable improvements while he’s awake.  His hands are more relaxed and open, less likely to be in tight little fists.  His arms straighten more, and he’s reaching for things a lot more.  It also hasn’t appeared to negatively affect his neck strength and head control, which we’ve all worked so hard – Stellan especially – to improve.


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