I like routine. Having a baby on medication to try to control and stop IS, sort of blows a routine into pieces most the time. We talked with his neuro’s office last Tuesday, and since the start of his medication (Sabril 250mg 2x/day), he is still having spasms. So, his doctor decided to double the dosage to 500mg 2x/day; basically wants to nip the spasms in the butt, getting them to stop as soon as possible. A week into the double dosage, waking up and going to bed is still fairly normal and sleeping all (or most) the night…thankfully! Timing of meals is close, minus the fact that his appetite has started to increase. He’s started to eat some more chunky foods, which he’s been a fan of, probably half the reason because it’s more fun to make a mess with!
But the tiredness and crankiness is what is keeping us on our toes as to when those come and go. This weekend was a bit of a struggle because he was tired, but got himself so worked up multiple times, he couldn’t sleep, even though that was the problem! We took him swimming on Sunday at the hydrotherapy pool in Bellevue. He floated around like a fish, who tired rolling over to his side while floating on his back, and so relaxed at some points it looked like he was going to fall asleep right in the water. He certainly caught up on his sleep after lying in the warm water!
Even though we’re balancing figuring out how he’s adjusting to his medication, there are pros, big pros. The “fog” that use to roll in during the middle of the day, when the spasms would just make him so tired and out of it, has lessened significantly. He can be tired and lethargic in general either from spasms or the meds, but it’s here and there and not all day long. That means our little boy’s attitude and personality is coming back more and more, and it’s been so amazing.
I’ve also been keeping a daily journal of how his days go and what/when/if he has any spasms. Giving his neuro office an update today, I realized in the last week of starting the double dosage, the spasms have diminished even more. He’s been having small twitches in his sleep, in his fingers, hands &/or feet, but that’s really hard to tell if he’s dreaming or if they’re actual spasms. Pretty much for the past week, roughly every other day has been just a few sleeping twitches (which may not be real spasms), and the other days he’s only had one episode, and for the most part a small one with just his arm or just his eyes; not some huge full body episode. And today….saw no sleeping, nor awake spasms! First day seeing nothing since before he started having them several weeks ago :-)
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