We dropped Bennett’s Zonegran again 5 days ago so he’s been on 10 mg once a day in the mornings instead of 20 mg. I would say this drop hasn’t gone quite as smoothly as the others, just because he has been a little fussier overall this week. I do think he’s experimenting with his language more now though and his appetite has skyrocketed again. Honestly, the increas d appetite may be why he’s been fussier—I’m not used to feeding him so much so it took me a day or two to realize he was so hungry! His sleep has continued to be great—sleeping through the night with no bottles. Able to settle himself right down for naps and bedtime, but his naps have definitely been shorter and not as consistent as usual (which is unfortunate for me, haha).
He and Olivia have settled into a pretty good routine at this point so it’s feeling like I can do this 2 under 2 thing, which is an improvement from where I was at last week emotionally by far. Bennett’s getting used to having Olivia around 24/7 and he’s getting a little more patient when I need to run her upstairs and leave him downstairs and things like that.
In a few days we are going to drop his Zonegran so he’s completely off of it. I’m expecting a breakthrough seizure once we’re off, just because almost none of the SCN8A kids have seizure control with a single medication at a time. But if we could stay on just the Trileptal that would be awesome!! It seems to have less side effects than the other drugs so far. The only negative we’ve noticed is it may be affecting his overall balance. But we aren’t even really sure about that.
We may hold off on the final drop of Zonegran just because he’ll be going in on Monday (3/26) to get his loop recorder placed for his heart and we don’t want to push his little body’s seizure threshold any more than we have to. No seizures is still the goal—even during weans!
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