Armand’s been having trouble swallowing, usually while drinking. Audible swallows, it’s called, seemingly needing some effort to swallow instead of just second nature — usually accompanied with an audible *gulp*. Not always, but it’s something that has caught our attention. His speech therapist says it’s a sign that he’s losing control of that function, that his hypotonia is affecting that area. He has a swallow study set for tomorrow morning at 8am. During this, we’ll feed him some food that’s been “dosed” with barium, while he sits in front of an x-ray machine. We’ll be able to see on video just how easily food and liquids are going down, and how his muscles are guiding them. He had this same kind of study done in January 2011, before we had a diagnosis, and things were fine then. But that was then.
Also, Lindy and I are being more aggressive with his miglustat. He’d had such a hard time to start with that we had been tentative at first with increasing his dose. I’m done with that, and Lindy agrees with me — we can’t lose our son and then think “Well, at least we gave it half a shot”. So, while at first it took months before we’d add .5 ml to a dose, we’re now going to add 1.5 ml per dose each week as long as he can tolerate it. Final solution dose would be 40 ml each time — he’s currently at 10.5.
[Update]: Just returned from the test. Armand’s no longer safe to drink thin liquids (water) or nectar-thick liquids. We have to use a gel-based thickener for his drinks now, because his muscles don’t react fast enough to keep it from going down his airway. Not only that, but during the test, the time it that his water did go down the airway, he didn’t react: no coughing, choking, gagging — none of that. Which means he isn’t even fast enough to feel it to create a response, which isn’t safe for him. With solids (some applesauce, a sandwich, and some eggs) he did well, he still is able to chew just fine. So for now, no feeding tube needed. For now.