it has been exactly 1 week since we dropped our last dose and went to 0 mg of Zonegran. We decided to finish the wean starting the day after his loop recorder surgery. As far as effects we’ve noticed: appetite is ever increased, language and gross motor skill development/motivation seems to be continually regressing, and sleep has continued to be excellent—down around 6:30, bottle st 6:30am, back down until around 8 or 9. It’s a dream. He does seem more fussy and clingy during the day right now and we’re attributinf it to the end of the wean, but we’ll see if it levels out here soon or not.
It’s hard to know what’s a direct effect from the wean vs just coincidental timing. But it seems that the increased appetite and zero effect on sleep has been consistent with each drop. His mood and development are trickier.
Overall lately it’s been difficult to watch him lose motivation to work on his walking and communication. For a while there he was really really eager to try to stand and take steps back and forth or around the kitchen. He would flash a huge “cheese” any time he was proud of his success. It was really fun to watch him be excited to progress. Now it seems like he dreads walking, he feels like we’re forcing him, and he isn’t very successful much of the time.
His communication is similar right now. For a while there he was trying hard to mimic words and connect them to meanings. He actually said “grandma!” Multiple times intentionally to indicate his grandmas. But now we just hear this high pitched whine that’s pretty universal and keeps him from really trying to specifically communicate what he wants with us. Our Kids on the move therapist worked with me this week on how to not anticipate his needs, and actually create scenarios where he has to reach out for help or protest verbally so that then I can help him remember I’m there and I can help if he asks me. He sometimes seems to understand what’s happening, but mostly just seems to get frustrated that I keep delaying giving him what he wants, haha.
It’s been difficult on Dave and I lately. It’s hard not to watch a regression and wonder if this is the beginning of the end of his development. That just seems like such a common trajectory for our SCN8A kids. We feel like we’re being faced with the reality of the very real possibility that he may never walk or communicate verbally with us. It’s pretty overwhelming and scary for us, and it gets hard during the days when we’re trying to get him to communicate with us and we can just see that his brain can’t connect what we want him to do or why. It’s discouraging and repetitive without much positive feedback to keep us going.
We’ll see if as he levels out of the Zonegran wean we see some progress in his development. I’ll keep you posted!
