Well, as gun shy as we've been about starting another wean, I've been getting more and more worried about Bennett's development so we decided to start weaning the Zonegran a week ago today. We dropped his dose by a full 25%. He was on 40mg 1x/day and we went down to 30mg 1x/day. It's a pretty fast wean compared to how slow some families take it, but he did so well with the Phenobarbital wean we felt okay trying it out.
As far as the effects we've seen--it wasn't nearly as immediate as the Phenobarbital (those effects seriously showed up in 1 day every time), but after a few days his appetite (for table food!) has continued to increase, I would say he's overall happier during the day (so much so that we've been not giving him CBD because his mood has been so good), and his sleeping has gotten even better! He's slept through the night I think 4 nights in a row now? Like, we haven't had to go in AT ALL--let alone give him any bottles other than right before bed and right when he wakes up. He's also sleeping longer and playing alone in his crib better. We usually put him down around 6:30 pm, he falls asleep around 7:00 pm, we don't hear from him until 5:00 am or 6:00 am when he gets a small bottle, and then he sleeps until anywhere from 7:30-8:30 am. It's a very manageable sleep routine (for the first time ever basically...), especially with having to wake up every 3 hours now with Olivia.
So today we dropped another 25% of his original dose, leaving us at 20mg 1x/day. I'm really nervous about breakthrough seizures because we're taking away half of his seizure control basically, but we need to get off of it so it can stop inhibiting his development. We're not even sure if it is inhibiting his development, but I definitely think it's affecting his sleep and appetite. That alone is reason enough to get off of it for me.
Overall, just like with the Phenobarbital, we've seen him continue to progress with his language better--he's back to saying things like "mamama" using consonants where he was only saying "aaaaah" for about a month there. And I think he's a little less zombie-like during the days already. Hopefully it just continues to get better from here!
No comments:
Post a Comment