Last night’s trial of clonidine was, well…
I’ll let my posts on Twitter tell the story:
The aftermath of four consecutive nights without sleep (well, three years, really, but we have a few good nights once in a while) has been brutal today. This is, by far, the worst stretch ever for us. Nik’s ability to handle even the slightest deviation from routine or expectation has led to a series of frighteningly explosive meltdowns. Nik’s sweet little face is covered with self-inflicted bruises and he looks like he was on the losing end of a barroom fracas.
We opted to hold off on the clonidine again until we speak with our neurologist and get a clearer plan in place and set some parameters about how long we need to give the clonidine before we call it a bust.
We’ have gotten some good feedback and suggestions from many sources about possible medications to explore. At this point, though, we are very limited in what we can give Nik because of his swallowing difficulties. If it can’t be crushed or chewed, mixed in with food, or doesn’t come in a liquid form we can’t try it with Nik right now. This rules out some of the medications we’ve heard so many good things about, relatively speaking.
Niksdad and I suspect there is more at play right now than just the sleep disorder and are working hard to get to the bottom of whatever it is. For quite some time now, Nik’s had chronically inflamed lymph nodes, enlarged tonsils (though no sign of active infection), and chronic fluid in his ears —sometimes resulting in infection, sometimes not. We suspect that the pressure, the shifting fluid, the discomfort of swelling in his throat —all of it— is exacerbating the problem by causing some obstructive sleep apnea. Not to mention the intermittent and unpredictable changes in Nik’s eating and drinking patterns. We see the ENT on March 2 and will be discussing a tonsillectomy. Until then, please send good thought and prayers for sleep.
Oh, and send coffee. Lots and lots of coffee!