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!! 🤞🏻
Showing posts with label CBD. Show all posts
Showing posts with label CBD. Show all posts
Tuesday, December 19, 2017
Saturday, December 9, 2017
12.9.17 Intro of CBD
So the last post ended with us celebrating that we were getting back onto the correct dose of Phenobarbital and it was helping Bennett's sleep. Haha...I should never say things like that out loud, ever again. On Monday (12/4) He was up for something like 4 hours in the middle of the night--I took the second shift when Dave needed to tap out. And then on Tuesday (12/5) He was up from about 12:30-6:45. I took him after about an hour I think, because Dave had a huge presentation the next morning at 8:30am. We spent about 3 hours driving the freeway--because of course he wasn't content just being in a still car...we had to be moving. And the rest of the night was spent with him crying and climbing all over me and the furniture until I finally just put him in the crib at 6:45 and told Dave that I quit, haha. I believe Dave swaddled him and he went down for like an hour or something ridiculous before he was up for the day.
The rest of the week followed suit, and Bennett was not much better during the days that he was during the nights. Lots of crying, overtiredness, restless, and frustration all over the place. Not a great appetite this week either. We were trying to go back to the Omeprazole (from the Prevacid), just in case that had something to do with the insomnia, but we didn't really notice a difference, and it's literally impossible to break those time release capsules into accurate doses every night for him, so now on Saturday we're back to just giving him the Prevacid tablets and hoping for the best.
But--I do think he's trying to say "mama"!!
In better news, we got our Charlotte's Web Everyday Plus CBD Oil in the mail yesterday (FINALLY). It's taken something like 2 weeks to get here! I've been doing all my research through the Realm of Caring website to figure out his dosing and all of the things we need to be aware of before starting him on it. They actually have a really solid organization and it's been really helpful getting started! So I knew we were supposed to give it 2 hours between administering CBD and his regular anti-epileptic meds (AED's), so last night we just put him to bed like normal without the CBD, but then he was wired (surprise, surprise...) so he actually ended up staying up another 2 hours just crawling all over upstairs and on top of us, so by the time 8:00pm rolled around we decided we would try the CBD and try to put him down again. He actually really liked the taste of the drops which was weird because it's just plain olive oil, but we aren't gonna look a gift horse in the mouth. So far, this kid will eat anything from a syringe like it's candy! So we then swaddled him and he actually calmed down within about 5 minutes!! Throughout the night he only woke up at 1:30 am for a bottle and didn't scream himself to sleep like he's done all week. He just cried mildly until he fell back asleep. Still not the easy up, bottle, down like we'd hope for, but better than hours and hours of screaming!
Then this morning I gave him his second dose (tiiiiiny dose--3 drops from the dropper) and all day he's been a different kid! He's mellow, happy to play independently for stretches at a time, smiley, babbling, and crawling (on his knees) and pulling himself up all over the place. Dave actually walked in to find he had pulled himself to a stand in his crib after his nap all by himself! And he's beginning to understand how to put himself in a sit from his army crawl position. This is huge because it would mean he could crawl to a toy he wants and actually sit himself up to be able to play with it like he wants to instead of getting upset when he reaches the toy and can't sit up by himself.
Then when Dave went to put him down tonight (he'd given him his second dose for the day around 3:30pm) he wasn't tired, but instead of screaming inconsolably, he actually PLAYED in the crib by himself for something like 25 minutes! Then Dave got him up and he was content and happy to just move around, and when Dave swaddled and put him back down at 7 (an hour earlier than this week's par), he went right to sleep!
Who knows if this has all been his first few doses of CBD or not, but it is supposed to have a pretty immediate effect and this is exactly the effect I've been hoping for--decreased fussiness overall, better sleep (oh and he took 2 solid good naps today too!), more cognitive and physical connections and developments, and overall just a more normal everyday experience for Bennett. I'm super hopeful this is the beginning of a really good thing for him and us, but obviously nervous too, because it seems like a lot of times we have this "honeymoon" period that eventually comes crashing down where he stops sleeping through the night again and starts struggling with everything. We'll just have to wait and see!
Oh, and the other thing we did this week was take family pictures! I seriously have zero pictures I would feel comfortable showing anyone of me and Bennett since all of this started over the summer because it coincided with me falling pregnant and that put me in NO state to be taking pictures for a few months...haha. So I'm finally feeling more normal and Bennett is smiling again (not as much as before--I still think the Zonegran makes him a bit of a zombie) so we were able to actually capture some good smiles and get some pictures of the 3 of us for a Christmas card :) That made me very happy because I live in constant fear that some med change or some seizure will take that smile away from us again and I want to make sure we have it somewhere we can always see it.
Oh, and just for the record, we decided to up his Zonegran dose because Dave and I both started noticing those nocturnal twitching/seizure-like movements again during the night and think that as the Pheno level has dropped, it make mean he's breaking through with nocturnal seizures or something. So we're now at a full 4 mL of Zonegran and I think he's kinda foggy, drooling more, sticking his tongue out a lot, but I'm hoping he'll level out soon.
The rest of the week followed suit, and Bennett was not much better during the days that he was during the nights. Lots of crying, overtiredness, restless, and frustration all over the place. Not a great appetite this week either. We were trying to go back to the Omeprazole (from the Prevacid), just in case that had something to do with the insomnia, but we didn't really notice a difference, and it's literally impossible to break those time release capsules into accurate doses every night for him, so now on Saturday we're back to just giving him the Prevacid tablets and hoping for the best.
But--I do think he's trying to say "mama"!!
In better news, we got our Charlotte's Web Everyday Plus CBD Oil in the mail yesterday (FINALLY). It's taken something like 2 weeks to get here! I've been doing all my research through the Realm of Caring website to figure out his dosing and all of the things we need to be aware of before starting him on it. They actually have a really solid organization and it's been really helpful getting started! So I knew we were supposed to give it 2 hours between administering CBD and his regular anti-epileptic meds (AED's), so last night we just put him to bed like normal without the CBD, but then he was wired (surprise, surprise...) so he actually ended up staying up another 2 hours just crawling all over upstairs and on top of us, so by the time 8:00pm rolled around we decided we would try the CBD and try to put him down again. He actually really liked the taste of the drops which was weird because it's just plain olive oil, but we aren't gonna look a gift horse in the mouth. So far, this kid will eat anything from a syringe like it's candy! So we then swaddled him and he actually calmed down within about 5 minutes!! Throughout the night he only woke up at 1:30 am for a bottle and didn't scream himself to sleep like he's done all week. He just cried mildly until he fell back asleep. Still not the easy up, bottle, down like we'd hope for, but better than hours and hours of screaming!
Then this morning I gave him his second dose (tiiiiiny dose--3 drops from the dropper) and all day he's been a different kid! He's mellow, happy to play independently for stretches at a time, smiley, babbling, and crawling (on his knees) and pulling himself up all over the place. Dave actually walked in to find he had pulled himself to a stand in his crib after his nap all by himself! And he's beginning to understand how to put himself in a sit from his army crawl position. This is huge because it would mean he could crawl to a toy he wants and actually sit himself up to be able to play with it like he wants to instead of getting upset when he reaches the toy and can't sit up by himself.
Then when Dave went to put him down tonight (he'd given him his second dose for the day around 3:30pm) he wasn't tired, but instead of screaming inconsolably, he actually PLAYED in the crib by himself for something like 25 minutes! Then Dave got him up and he was content and happy to just move around, and when Dave swaddled and put him back down at 7 (an hour earlier than this week's par), he went right to sleep!
Who knows if this has all been his first few doses of CBD or not, but it is supposed to have a pretty immediate effect and this is exactly the effect I've been hoping for--decreased fussiness overall, better sleep (oh and he took 2 solid good naps today too!), more cognitive and physical connections and developments, and overall just a more normal everyday experience for Bennett. I'm super hopeful this is the beginning of a really good thing for him and us, but obviously nervous too, because it seems like a lot of times we have this "honeymoon" period that eventually comes crashing down where he stops sleeping through the night again and starts struggling with everything. We'll just have to wait and see!
Oh, and the other thing we did this week was take family pictures! I seriously have zero pictures I would feel comfortable showing anyone of me and Bennett since all of this started over the summer because it coincided with me falling pregnant and that put me in NO state to be taking pictures for a few months...haha. So I'm finally feeling more normal and Bennett is smiling again (not as much as before--I still think the Zonegran makes him a bit of a zombie) so we were able to actually capture some good smiles and get some pictures of the 3 of us for a Christmas card :) That made me very happy because I live in constant fear that some med change or some seizure will take that smile away from us again and I want to make sure we have it somewhere we can always see it.
Oh, and just for the record, we decided to up his Zonegran dose because Dave and I both started noticing those nocturnal twitching/seizure-like movements again during the night and think that as the Pheno level has dropped, it make mean he's breaking through with nocturnal seizures or something. So we're now at a full 4 mL of Zonegran and I think he's kinda foggy, drooling more, sticking his tongue out a lot, but I'm hoping he'll level out soon.
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