We are officially at about 19 mg of Phenobarbital a day at this point. We dropped a quarter pill about 7 days ago now. A quarter pill is equivalent to basically 3.5 mg—that’s how slow we’ve decided to wean him from here on out. We just can’t do another week of hell-sleep as he adjusts to the wean. We’re still at the 40 mg of Zonisamide a day and it seems like his nocturnal seizure activity (or whatever it is) has stayed away so far. We’ll see what happens when we drop the next quarter Pheno pill. We plan to drop it in 3 days, right after we get to California for Christmas after a 12 hour drive.
Overall this past week Bennett has been pretty content, which we attribute almost entirely to the CBD. We give him about 5 drops 2-3x/day which is a little higher than the recommended starting dose, but we just notice such a HUGE improvement as soon as we give him the drops that it’s difficult not to want to give him more. Of note this week is his new ability to get in and out of a sit on his own no problem. This is pretty life-changing. Now he can crawl to a toy, get in a sit to play with it, crawl to a new one when he’s bored, get into another sit, etc. he isn’t constantly upset and frustrated now and really only clings to us when he wants help walking or standing. He is definitely Italy needing to be swaddled every night still. He’s having a hard time self-regulating, even though he can nap during the day with no swaddle like a pro. Not sure what that’s about.
He seems to have leveled on the Zonisamide too because just yesterday Dave was remarking that he hasn’t been letting his tongue hang out or drooling nearly as much as last week. So weird that that seems to be a side effect of the Zonisamide, but he’s definitely keeping his tongue in his mouth more. And he’s also started babbling so much more than he ever has. He will babble to himself, try to copy our noises, babble when reading books, etc. It’s really great to hear!
This week he’s also showed more interest in other kids when he’s playing than he ever has. He’s interacting with them and genuinely smiling and responding to them when they try to play with him. It’s totally awesome.
We wouldn’t be surprised if he’s walking in the next month or so barring anything drastic happening to interrupt his progress, and we definitely plan to stay the course with the CBD as long as we keep seeing these improvements. I think it’s helping make the Pheno wean smoother as well, which is great. Most parents say it’s getting off the first 50% where they see increased seizures so with our next drop we’ll be there still with no seizures! (Knock on wood)
We’re nervous about the long drive to California, but we’re trying to do it through the night so Bennett will be asleep for the majority of it. Wish us luck!! 🤞🏻
No comments:
Post a Comment