Weaning Zonegran is feeling like a very good decision right about now. Bennett has slept through the night as well as sleeping in and taking long naps throughout the day for about a week now, which feels like nothing short of a miracle. His appetite is doing well too! He’s still picky about which foods he’ll eat, but he’s at least getting calories (even if it is from yogurt, pouches, and crackers. Oh and we can’t forget scrambled eggs. That kid would eat those every single day no problem, he loves them)!
While I’m still anxious about seizure control, so far Bennett seems much more alert, overall significantly happier and independent during the days, more communicative with us, and just overall more engaged in life.
We had a kids on the move evaluation this week and they were surprised at the regression in his language and the fact that he is still not walking at 15 months after being so close a month ago. He now has a bigger delay emotionally and verbally than he did before, and his gross motor is falling behind as well, but his fine motor skills continue to be on par if not ahead of his age group.
I asked if we could get a speech language pathologist and physical therapist out here sooner rather than later just because SO many of the SCN8A kids are completely nonverbal and I want to give Bennett the best chance possible. She said usually they dont really come out until 18+ months, but in the case of a genetic disorder that most likely won’t get better on its own they may be willing to come a little sooner. So we shall see!
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