1.24.18: Day 7 of ZERO mg of Phenobarbital and He Sleeps!!

I know I said I wouldn't ever say it out loud if Bennett started sleeping better for us because that always seems to curse things, but we're just so thrilled over here that I want to shout it from the roof tops!! Our 13 month old is able to put himself to sleep WITHOUT a swaddle, WITHOUT a baby swing, and WITHOUT a 1-2 hour bedtime (and naptime) routine. Whaaaaaat? We're beside ourselves, honestly.

It actually happened a few days before we did our last Phenobarbital drop. Dave left for a work trip to Florida about 10 days ago (Bennett was at about day 7 of dropping to 7.5mg at this point) and up until he left, putting Bennett down was a complete disaster. Dave had to take him even when it was my night with him because I couldn't rock him to sleep long enough before my body would start contracting to the point that I needed to be in the bath or something to manage the "pressure" (aka...pain). Needless to say, I was more than overwhelmed and terrified for Dave to leave us for three days and two nights where I'd be handling things 100% on my own. But we both prayed (probably more fervently than we have in a while) that somehow things would work out and I'd be able to get Bennett to sleep without going into preterm labor while Dave was gone.

The very first morning Dave left (Monday, January 15) I was contracting like crazy for some reason so when it came time to put Bennett down for his 9am nap I literally had no choice but to just give him his bottle in the rocking chair, sing a short song, put him in the crib with his blanket and hope for the best. It sounds crazy, but when I'm badly contracting, even leaning over the rocking chair footstool to swaddle him makes it significantly worse, so I opted to leave it out of the routine and just see what happened.

MIRACULOUSLY, and seriously by the hand of God we're pretty sure, he cried for 4 minutes and passed out! I was so shocked and relieved that I started tracking his sleep for every nap and bedtime for the next few days in case it helped me figure out the secret, haha. Turns out, I really didn't need to do that. He repeated the same amazing feat at his 1:45pm nap AND bedtime!! Over the course of the three days Dave was gone I was actually able to completely wean Bennett of the swaddle (cold-turkey!), shorten our bedtime routine to under 10 minutes basically, and move his bedtime back up to around 6:30pm instead of the 8:45pm we'd been stuck at for a little while. (Mind you, we had previously tried no swaddle, letting him cry for a while, etc. and it had NOT worked up to this point in the last few months. We're talking hours of endless screaming and completely inconsolable...Something big shifted this day.)

He still woke up through the night, but it was literally for a diaper change, bottle, and back down. Less than 5-10 minutes each time, no problem. I can't even describe how incredible this was. After months of hours and hours trying to rock him to sleep and feeling like we were defusing a bomb every time we transitioned him into the crib, it just felt like a dream. It WAS a dream, and still is! He can be put in his crib now and play anywhere from 1 minute to 30 minutes on his own before just falling asleep by himself, and he doesn't always cry when he wakes up--sometimes he stays in and reads his books or entertains himself for an extra 20-30 minutes. This has been heaven-sent for us right now mostly because my contractions have been so strong and they get triggered by lack of sleep and lifting Bennett, so the less I have to do that throughout the day and the more naps I can take, the better!

We were nervous to drop his Pheno completely after having such amazing sleep for three days, but we were also just so eager to get him off of it all the way that we decided to drop it the night Dave came home. Since we did that, we've noticed maybe a slight regression in his overall demeanor throughout the day (clingy, fussy, tired), and he's definitely shortened his naps significantly even though he's exhausted, but overall his sleep has not really suffered! We are so grateful. I was telling Dave tonight that it's so crazy that even after 7 days of him being able to go down like a normal kid I am still floored every single time he does it. It just doesn't even feel like real life. I wonder how much EMDR therapy we're going to need to recover from the trauma of the hell that was trying to get Bennett to sleep for so long?

***********

I am worried that now that the Pheno is out of his system we're seeing a higher Zonegran level (he's at 40 mg 1x/day) which might be contributing to the exhaustion and zombie-ness we've seen emerge since the final drop, so we're considering backing off of it just a little bit to see if we notice any improvement. That's scary though because other than the CBD oil, Zonegran is the sole medication for seizure control right now, and we're less than a week away from 3 months seizure-free!! We would hate to break that streak, obviously. But some parents have said that Zonegran caused as much of a fog as Phenobarbital did for their kids, so really it would be best to be off of it and on one of the meds that are better for our SCN8A epileptic kids. We just don't think we can face another full titration-to-therapeutic-level-of-a-new-drug-while-managing-new-side-effects-before-starting-a-new-wean-while-managing-those-side-effects with a new baby so close (I'm 34 weeks now). 

We saw good seizure control at just 25-30 mg/day before though, so I would feel comfortable titrating down by about 5mg per week or two weeks if it means he'll sleep better at night (still waking up twice regularly) and be less of a zombie during the day. We'll just have to see how ambitious we are once we feel like he's fully leveled off the Phenobarbital and it's not in his system anymore. CBD continues to help improve his mood and clarity immediately after we give him his morning dose and afternoon dose. But again, even though it has come with no side effects we can tell so far, I would love for him to not have to be tied to so many substances every day :/.

Overall, Dave and I have just felt profoundly grateful for the last week of relative calm we've had. Someone asked Dave at church how Bennett was doing and his knee-jerk answer was something along the lines of "He's hangin in there...", but then he took a moment and realized that actually, we can honestly say right now, "You know what? He's doing really well! He's cruising around everywhere he can, so close to taking those first independent steps. He's trying new words all the time and trying to communicate with us more. He's been almost 3 months seizure free. He's completely off of the drug that was probably causing some severe delays in development. He's sleeping better than he has since he was a baby basically. And we've been able to get some solid sleep this week which has changed our lives! So overall we're actually doing really well this week!"

It's amazing what a little sleep can do for you, right? Keep it up Bennett-boy! You're doing great!!

1.16.18: Day 9 of 7.5 mg of Pheno

**I never got past writing the title for this post because Dave went out of town for a few days right around when I started it, and at the same times, I started to have more regular, strong, frequent contractions which have seriously caused fatigue for me.**

But looking back, he was doing pretty well at this point, so we decided to drop our last Pheno dose to ZERO after just 9 days of the last half-pill drop! Next post will fill you in on how that's gone for us. (Spoiler alert: We LOVE Bennett off of Pheno!!!!!)

1.7.18: Half Pill Pheno Drop!

Well, since the last post, things haven't really changed with Bennett's sleep--he's still taking forever to settle in our arms, still requiring a swaddle every single time (even naps), and still ending up in the swing with Hamilton on repeat almost every night. Since he hasn't seemed to level out any more we decided we would just take the plunge and drop by a half-pill tonight (instead of our normal quarter pill drops). We figure he's at an overall lower level at this point in his body so it should theoretically be a little easier than it was the first time we dropped by half a pill (aka: hell), but who knows? I'm not expecting to get much sleep this week or next.

I will say, though, that he has been doing better with his solids each day this week! He ate two whole ritz-bitz sandwiches without me breaking them into pieces at all! And he had corn tonight that he actually picked up and put in his mouth on his how. He NEVER does this. So I think he's getting the hang of the chewing and swallowing thing a little more each day. He is also babbling like crazy still, and he seems to know and understand the sign for "all done!" when he wants out of his high chair. He's also starting to be more consistent with shaking his head for no and nodding it for yes--but we're not sure if that's coincidence or not.

It's so hard to not attribute every developmental gain to the Pheno wean because it really feels like with each drop we see very clear improvements. Before we started the wean he couldn't crawl on his knees, he was barely making any sounds, let alone consonants, had absolutely no interest in communicating with us via sign or language, wouldn't play independently with his toys, etc. But we also started CBD about a month ago and I think that's helped a ton too. But either way, we like where he's at developmentally right now minus the huge sleep regression we've seen in the last few weeks. I can't WAIT until we can get back to a place where we can just lie him down in the crib and he can play or read or do whatever he wants until he falls asleep, or wake up and entertain himself rather than just cry immediately. Not to mention getting any uninterrupted sleep through the night just sounds like a dream right now. One we are legitimately scared we will never realize :(.

It's no wonder they use sleep deprivation as a form of torture. It really messes with you when it accumulates over months at a time. Dave has been taking Bennett most nights 100% because if I stay up with him I end up significantly more nauseous or in pain the next day with this pregnancy. But we kind of hit a breaking point this week where it was just too much. I've been sick with a cold for about 6 weeks now (two rounds of antibiotics later...still sick), and Dave caught something similar this last week, we think Bennett might have actually, too, but it's so hard to tell with that kid. So as this was the first week back from our Christmas vacation with my family, the stress of having to function in real life again with the lack of sleep hit us both hard and led to a long night of tears, frustration, hopelessness, and eventually (after much poking and prodding from Dave) reconnection. I think we're starting to get a glimpse into the life of special needs parenting. It's rough. And you don't really ever get a break. And there isn't really an end in sight. Not that all parenting isn't difficult, but there's something exquisitely unique about the level of stress, sleep-deprivation, and rigidity a special-needs child brings to your life. It's possible that a lot of this is due to the Phenobarbital and we'll see improvements in a few weeks, but I'm feeling a little less-than-hopeful at this point. :/

1.4.18 Day 10 of 15 mg Pheno Wean

So we are now waking up on day 10 of being at 50% of our original Pheno dose. I would say that overall this drop has been slightly easier than the other drops as far as Bennett's sleep and daytime fussiness goes. But it still means it regularly takes us about 1-2 hours to get him in his crib (swaddled, mind you) and he'll only ever sleep in about 3 hour stretches.

He did AWESOME on the drive back from Utah, and we are definitely driving through the day with him from now on--NOT the night, haha. We were able to do the whole drive in one day which was fantastic because we had a lot of work to do on the house when we got home before Dave went back to work. We had left it a complete disaster because we were rushing to beat the storm when we left.

Anyway, since we got home, Bennett's sleep has been awful again, and we're guessing it's because we've been at about days 7-10 of the drop, and the half life can be up to 9 days for Pheno, so he's probably just finally starting to feel the drop.

On the plus side, though, since the day we dropped this last dose (literally), I haven't seen him intentionally army crawl once! He is on his knees all the time!! And walking when he can be. If he falls into an army crawl he pops right back onto his knees asap. And his babbling has only increased. He's starting to differentiate MaMa and DaDa I think. Still no idea what they mean, but he's definitely exploring his range of consonants.

Unfortunately, with the sleep issues and the fact that he'll only ever take about 2 bites of table food before refusing it in favor of baby food, I'm getting a little more worried that he has some sensory processing issues going on. I asked our team coordinator from Early Intervention to have the occupational therapists come out at our next appt. to have him assessed for sensory processing issues. And in the meantime, I'm trying to sew him a weighted blanket to see if that'll help him sleep at night. The swaddle is NOT safe and I'm getting anxious about it, but there is literally no other way for him to soothe to sleep right now. We even had a couple of nights in the baby swing with Hamilton playing for hours this week!!

Luckily, yesterday and last night were a slight improvement. It hasn't taken nearly as long to get him to go to sleep on us, and the transition from our arms to the crib has gone much more smoothly and quickly even if we bump or make a noise or whatever. I think day 9-10 is where we start to really see him level on the Pheno drop. I wish we could just stay here for a little while so we could all catch up on our sleep, but with the baby coming in basically 2 months, we are in a rush to get him fully off so we can settle his sleep routine ASAP.

Oh, and yesterday we also started giving him his 40 mg of Zonegran in the morning instead of night to see if that would help. So who knows what exactly is helping, but something's gotten better in the last day or two. Hopefully it lasts!

12.27.17 Day 2 Pheno 15 mg/day

Well, Christmas morning was fun with Bennett. He got up early and we all had a blast opening presents for a while with my family. He LOVED his new dump-truck toy from my mom to him and his amazing quiet book from Dave's mom. He also liked his maracas from us and some other little things we got for him. It was fun to watch him crawl around and enjoy exploring the ribbons, wrapping paper, boxes, and new toys.

The rest of the day went well too, so we decided to drop by a quarter pill that night so we would have help during the days if his nights got crazy. He actually did alright the first night, and the second night was a little tougher, but not awful. He woke up more, and he was more difficult to put back down after his bottles, but at least we didn't have hours of screaming nonstop during the night!! So today is the second full day and third night of the wean and we definitely noticed more overall fussiness, making some weird movements with his mouth (nonstop raspberries all of a sudden?), and it took him about an hour to actually go down tonight for bed. Hopefully he'll sleep relatively well so we don't fall apart from sleep deprivation, haha.

***I never finished this blog post--which is probably a good indicator of about how well he was doing during this drop...haha***

12.24.17 Christmas Eve

So we tried to drive through the night with Bennett on Tuesday the 19th to get to California for Christmas. Yeah...that was a TERRIBLE idea.  When he woke up for his first bottle around 12 (had been driving about 3 hours) he would NOT go back down. It didn’t matter what we tried. And we tried for about 2 hours before we finally called it quits and stayed the night in St. George. Even once we were in the hotel he was still so worked up it took about an hour to get him to sleep and he kept waking up over and over again for no discernE reason.

We got up and started driving after breakfast the next day and we made it the rest of the 6 hours (turned to 7) by making sure we stopped around mealtimes and let him get out and about and really pushing forward when he was napping. I think we’ve decided it’s much easier to travel with him during the day than at night, and we’ll never do that again. It was awful.

 Now that we’ve been here a few days though, he has finally started to calm down his sleep a bit. He still wakes up more than 2x every night and he can’t settle without a swaddle, but we think we’re seeing him level on the Pheno drop finally. Unfortunately, we need to drop again so he’ll basicLly be at 15 mg/ day. We want to drop it here in CA where we can sneak naps in if his sleep goes to hell again because my family is around to help with him. But we are seriously dreading it.

Overall during the days he’s been doing awesome. Super engaged, learning things, waving this week! Loved being with all of his aunts uncles and grandparents. Still sitting on his own and crawling like a fiend. Trying to walk. Etc. but we have to get off the Pheno so we’re gonna have to risk. Drop in daily mood.

Today was Christmas Eve. It was an emotional church for me because for some reason “Once in royal David’s City” was performed and really brought up all of the emotions SCN8A holds for me. I was just looking over watching my siblings And parents play with Bennett and couldn’t help but think of how heartbreaking it would be if we were ever to have a Christmas with our family where he wasn’t there. Or if we ever had to miss Christmas because he was in the hospital recovering from a seizure or something.

I think that talking about Mary and her giving birth to Christ, her baby boy, just triggered all of my strong feelings of love for Bennett and with those seem to come all the feelings of fear lately. I was also just overwhelmed with gratitude for how well he’s doing right now and how happy he is during the days. I’ve been so grateful my family is getting to spend as much time with him as they are this week. I want them to get to know him and love him like we do and up to this point he hasn’t really spent much time with most of them.

Anyway, I’m not sure why today was one of those days for me, but I know that watching Bennett play baby Jesus in our family nativity (and be totally chill and adorable the whole time, haha) was the highlight of this Christmas season for me. It was so tender for me to see him be held by my cousin and just seem to enjoy every minute of it. I don’t want to ever have to think about how we would cope if he were ever gone. So tonight I’m just thinking about how grateful and happy I am that he’s here, and he’s doing so well. Can’t wait for Christmas morning tomorrow! He loves the ribbons on the presents, so I think he’ll have a ball!

12.19.17 Next Drop of Pheno—Still Love CBD!

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!! 🤞🏻