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?

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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!! 🤞🏻

12.3.2017 Day 12 Pheno Wean and He Sleeps!!

So........it turns out it wasn't the Zonegran OR the Prevacid causing Bennett's crazy insomnia the last few days. Two nights ago Dave asked me somewhat sheepishly, "Wait...so with these new pills, is Bennett supposed to have one and a half? Or just one?" The answer was one and a half, and you can probably guess how much he'd been giving him (just one...). So Bennett had accidentally dropped to 15 mg/day of Phenobarbital, when he was supposed to be getting 22.5 mg/day per our wean schedule. As scary as that was, we were glad it wasn't the Zonegran or Prevacid that seemed to be the culprits. Once we had him back at the right level he was already sleeping better and acting more like himself--hallelujah. Poor Dave was dying from the lack of sleep and having to take care of me being sick. And thank goodness Bennett didn't have any break-through seizures or anything as a result of the mistake! So far we are still seizure-free almost 2 weeks into the wean.

Actually, in just the last couple of days Bennett's been making some great progress in his walking, crawling, and even babbling! He loves walking around in his little 4-wheeler walker, and he's able to push the VTech Sit n' Learn Walker across our carpet because it gives enough resistance to keep him going slow. He's also constantly trying to get up on his knees to get into a sit or a stand on his own from his army crawl, but for some reason he has such a hard time staying up on those knees. I honestly think he'll be walking before he figures out crawling correctly, haha.

Just the last day or two he's started really babbling a lot with us! He can only really articulate "baa baa!" but he walks around all day going "babababababa", haha. I think he is trying to say Mama or Dada, but he can only figure out the "b" sound right now. It's so fun to see him trying to communicate in other ways than just screaming or crying, haha. I really hope we hang on to and keep growing his language. This morning I caught him flipping through a book on his own just making sounds to himself like he was trying to "read" it. That was huge!!

Overall the last few days (since we leveled the Phenobarbital out) he's been really happy and explorative. It's been so fun. We're dreading the next dose drop (this Wednesday), but we're also excited to see what other connections he's able to make with less medicine coursing through his veins!

Also, I love having the pulse oximeter at home. We did stop using it those nights his sleep went crazy cuz it was just too much to handle all at once, but I was actually able to get him to sleep one night by watching which things I did soothed him (lowered his heart rate), and which things aroused him more (raised his heartrate). It was pretty cool! And we figured out how to get the Oxygen and Heartrate levels in the baby monitor view so we can just get a snap look at them if we want to in the middle of the night. I've noticed that now I'll wake up worried about him and then be able to go right back to sleep because I know if something was wrong, the monitor would have alarmed, whereas before, I'd toss and turn for a bit and watch him on the monitor long enough to be sure he's breathing and safe. I love the peace of mind that's come from the pulse ox for me.

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The other thing we had to do this week was take Bennett to get his blood levels checked. :( We're considering adding CBD oil to his med regimen (it's supposed to really help these kids with the cognitive and other side effects of the anti-epileptic drugs), but we want to make sure we watch his levels closely because it can interact with some of the traditional drug levels in his body and we want to make sure we know what's happening with all of those--especially as we wean off the Pheno. He was a champ during the blood draw, and the phlebotomist was awesome actually! I've been hacking up a lung all week, so Dave was the one holding Bennett during it all and by the time I walked in to check on him, the guy had used a mini-heat pack first on his little vein to draw it out and already tied the elastic around Bennett's arm (which usually induces severe screaming...) and Bennett was happy as a clam!

Obviously he wasn't so happy once the needle went in, but the phlebotomist was able to get the blood flowing and only had to stick him once which is nothing short of a miracle. Poor Bennett was just upset and not understanding why we were all just watching and talking to him instead of getting rid of the pain while we were waiting for the vial to fill, I'm sure, which was heartbreaking, but once we got back to the car and turned on his jam (still "Helpless" from Hamilton--has been from day 1, haha) he was just fine! We'll have to repeat those labs once we add the CBD so probably in about a month or so, which is rough, but man, if we can have that phlebotomist every time, bring it on! And Bennett was really so brave. He's such a champ to go through all this and keep bouncing back. These poor kids are so resilient it's really amazing. We're pretty proud of him. :)

Dave had to work from home on Thursday because
I couldn't function with this cold/flu thing.
Bennett was in heaven :P

We discovered his new favorite food! 

TOMATO SOUP!!! 

11.30.17 Day 8 of the Pheno Wean

I’m sure these posts are incredibly boring to read for most of you, but I need a place to record our symptom changes as we mess with Bennett’s meds and can’t keep them all straight in our heads. So today marked day 8 of lowering the Phenobarbital to 22.5 mg/day from his initial 30mg/day dose. It also marks day 19(ish) of being at 30mg/day of Zonegran. Last night was the worst night we’ve had in a while. Bennett’s sleep has been rough basically for the last few weeks consistently, but last night he literally went down at 6, up at 10:30-2:00AM screaming, slept on Dave in the bonus room chair for like 2 hours and then finally went down at 4ish until 7 when he was up for the day just screaming from the get go. During the last few days he’s been miserable as well.

I woke up with a nasty cold yesterday and it was much worse today, so I’m wondering if maybe he’s feeling like I am (sore throat, headache, sinus issues, coughing), but he didn’t seem too sick earlier so it didn’t really cross my mind. But Tylenol and some natural baby cold syrup seems to be helping him so maybe he is? It’s so hard to know. But I wanted to document his behavior from the last few days. I haven’t been able to set him down without him screaming and crying to be picked up, but he’s not happy being held either. Every once in a while he’s content to walk in his walker, but that’s generally short lived. His appetite is down as well. We’re having to force him to eat even one thing of baby food at lunch and dinner. And he’ll take about 6 bites of table food before he pushes it away and refuses to eat anymore.

After going back and reading the last few posts, I’m thinking that 30mg of Zonegran is a bad dose for him. He seemed to do better on 2 mL—temperament and sleep-wise. His sleep struggles started when we upped to 3 mL and have only really gotten worse with the added Phenobarbital wean. It makes me want to back off to 2 mL of Zonegran while we’re still on a good amount of Phenobarbital for him to see if it helps the sleep issues.

The other culprit could definitely be his acid reflux. We STILL never got an Omeprazole prescription sent in correctly so we had a pulmonologist who ordered a sleep study for Bennett call in a different one—Prevacid solutabs 15 mg/day. We started that yesterday so it’s possible last night was a result of the new antacid med, but Dave wanted to continue with the dosing tonight as usual so we’ll see how he does with his second 15 mg dose! I’m super nervous. I’m really sick. I think Bennett might be sick. And Dave’s about to drop dead of exhaustion. After not sleeping at all last night he had to stay home to take care of me and Bennett while trying to work all day too :/.

I’m just praying Bennett sleeps tonight (we didn’t start off great...took 90 minutes of him swaddled and rocked before he would take 6 oz and pass out) so we can recover a tiny bit. And praying that we get some clarity about what to adjust to help fix his sleep. We can’t live like this!!!!!

11.27.17 Pediatric Follow-Up and Pheno Wean

I really wanted to get started on a sleep study for Bennett and see if we could get a pulse oximeter as soon as possible, plus we really felt like we needed to change his reflux meds because the Ranitidine was doing nothing for him anymore and his burps and poops were super acidic all week. Plus he was just fussy and irritable a lot. So I called Alpine Pediatrics and asked if there was any way they could squeeze us in even though it was the day before Thanksgiving. They were great and scheduled us with our regular doctor that afternoon so I could ask him about everything for Bennett.

I was actually pleasantly surprised how willing he was to refer us to a sleep apnea specialist for a sleep study, order a monitoring system for Bennett at night, and change his reflux meds. He seemed to actually take the SCN8A diagnosis a little more seriously than Dr. Morita did--we've noticed this trend in the neurology world. Neurologists are almost callous about seizures because they see them so often (I'm sure that's only natural, it's just sometimes that's hard on the parents of these kids who are seizing, I think...). Pediatricians seem to take seizures way more seriously, which is helpful in instances like this.

Unfortunately, the doctor actually sent an apnea monitor over that night--which alarms if Bennett stops breathing for 20 seconds or more, or if his oxygen falls out of a certain preset range, but it doesn't tell us his heart rate or oxygen level specifically. I decided I'd call once the office opened on Friday and see if they'd rewrite the script for an actual pulse oximeter since that measures what we're actually wanting to keep track of (oxygen and heart rate levels). They also sent over his reflux prescription to our pharmacy, but our insurance refused to cover the format they asked for. It's 4 days later and we STILL don't have the right prescription sent for his Omeprazole, but we are just using the over the counter pills for now and cutting them in half to get the dosage right (or at least close to right?). So crazy, haha. It does seem to be helping though! More than the Ranitidine, anyway. He hasn't been screaming as much when we lie him down and he's eating better from the bottle. Pray that this medicine keeps his reflux under control--we just do not need that to be a whole other issue on top of everything else right now...

So the night of the appointments with Dr. Morita and our pediatrician we started the first dose of our Phenobarbital wean!! This was super exciting and also really terrifying to me. I can't WAIT for him to be off of that drug completely because it's supposed to be the worst culprit for causing developmental delays and regressions, and I'm hopeful that once he's off he'll be able to coordinate his gross motor skills a little better and crawl on his knees and walk soon. I'm terrified though because Phenobarbital does seem to control his seizures really well for the most part. I think we've only ever had a handful since we started it. And in reading the SCN8A stories of the parents who weaned their kids from it, a majority of them saw the beginning of their huge status seizures start during their Pheno wean. All except one of them still says they would do it again to get off the Phenobarbital, but they all warned me to go ridiculously slow and be patient--don't rush him off of it even though it's tempting as you start to see him come alive again.

We're going down by 25% of his dose at a time. So 7.5mg out of 30 mg/day and we'll hold for 2-3 weeks, then drop another 7.5, and repeat until we're all the way off. This is much faster than most of the kids are able to do (most do around 10% each drop), but Bennett's dose seems lower than most of theirs, so I'm hopeful that with the coverage from Zonegran, we might be okay. Phenobarbital has a half life of 9 DAYS apparently...so we won't really know how he's doing until 2 weeks after the most recent drop, which is tough. It's tempting to want to go fast because we're already seeing improvements and it's only been 5 days!

We dropped his first dose by 25% on Wednesday (11/22), and that first night was hellish. Actually, his sleep has been pretty horrible since the drop, but he was also struggling on the Zonegran so it's hard to know what's what at this point. Either way, he's needing to be swaddled to get to sleep most nights, and when he wakes up, he wants to play play playyyyy. It honestly felt like that very first night he just all of a sudden understood that he could crawl anywhere he wanted and explore things on his own so he was going to do it alllllll night, haha. Within the next day or two, I was reading him a book we've read hundreds of times and he pointed to a red balloon on the first page. He never really points things out in the books, just sort of enjoys turning the pages and closing and opening the book. But this time, each page we flipped he would point to the red balloon! It was so crazy to me! It feels like he's sort of seeing things for the first time and processing them in new ways than he ever has.

Teething up a storm! Cut a tooth yesterday!

We turned around and somehow he had
gotten himself stuck in here! Such a different kid!

He also started waving intentionally yesterday and actually did it on cue this morning! We've tried that with him for months...and all of a sudden it clicked! And from day 2 of the wean I would say, he is constantly working on getting his knees under him and coordinating his hand movements with his knees to crawl in the proper position. Oh, and he wants to cruise all day long. I really do think he'll be walking pretty soon--which is amazing!! He's also exploring his voice in new ways right now. He's making all sorts of new sounds with his mouth and hearing new pitches and copying our intonation and such. It's really fun to watch. It really does feel like he's coming alive, to some extent. And this is all just after the first 25% drop! Of course it's possible this is all coincidence and he would've made these leaps this week anyway, but it sure feels like it's related to the Pheno wean. Now we just have to make it through this week (over the 9 day hump) with no seizures to be sure we're still in the clear to be able to drop again.

Happy baby!! 

I love when we see his scrunchy nose smile because
that was missing for so long when he was on the Keppra.

10.26.17 Acid Reflux and First Primary Children's Appt

We are officially 2 weeks Keppra-free with no seizures! This is the longest seizure-free streak we've had since they started in July and we're thrilled! I'm finding myself enjoying Bennett and enjoying the little moments every day without waiting with bated breath for his next seizure a lot more frequently and it has been SO nice. I feel overall more relaxed and hopeful than I have in a few months and it has been much needed.

Yesterday we saw Dr. Van Orme at Primary Children's hospital yesterday morning because they had a last minute opening (we weren't supposed to get in for another 4 months...). Van Orme was pretty old, but he was kind and patient. I think the appt. was almost 2 hours with him answering all my questions about medications and treatment plans. I told him I wanted to get Bennett off all AED's as soon as possible, and maybe CBD was the answer to that, but he was not a fan of that plan. He was pretty adamant that phenobarbital can be perfectly safe and he has plenty of patients on it with no cognitive impairment or delays. This flies in the face of about 90% of people's experiences I've heard and read about with their kids on phenobarbital. He offered up a couple different drugs we could try instead if I feel uncomfortable with it, but didn't seem too keen on the plan. He did order a nocturnal EEG for us, which I wanted because in the last week I've noticed Bennett having seizure-like activity at night where he wakes up around 2 am and convulses and then screams until he finally passes out an hour later.

We also went to see Dr. Morita yesterday because we had our follow-up scheduled with her a month ago and I decided to just keep both appointments to get a second opinion. She agreed about trying the nocturnal EEG and suggested an ambulatory one if the first EEG doesn't capture anything. That would be 3-4 days of Bennett being hooked up at home to the equipment, but I'm trying to avoid it because it sounds miserable to me, haha. But it can give us more data to work with, which would be worth it. She was clearer on which medication she recommended and agreed that Phenobarbital is a drug we want to get off ASAP because it DOES cause developmental delays. We decided to switch to Zonegran, but first we'll get the EEG and then slowly ramp up the Zonegran to therapeutic levels and then wean off the Pheno. I was happier with our appt. with Morita, and I think we'll continue to work with her. She seems to be a little more up on the current research, and is supportive of CBD as an option for Bennett.

The other notable developments this week are brought to you by Ranitidine. Ranitidine is the generic for Zantac and Bennett's been on it since he was about 4 months old because he's had pretty bad reflux. Now, Dave has never been convinced that he actually has reflux, and last month he convinced me to take Bennett off the Ranitidine to see if it really was making a difference. After about a month and a half of AWFUL sleep (not that he's ever really had great sleep, but this was worse than normal), we finally put him back on it a few days ago and Oh. My. Gosh. I will never forgive Dave, haha. Bennett's a totally different kid again! He was SO irritable and screaming in pain almost the entire day this last week and now he's content, plays by himself, sleeps longer than 2 hour stretches at night, and doesn't seem to be in pain! Needless to say, we are going to stay on the Ranitidine a little while longer.

The last few days have been awesome with him being so content and sleeping well, we're crossing our fingers he stays like this and remains seizure-free!!

Also, he CLAPPED!!!!!!!

10.9.17 The Keppra Wean

Some days are easier than others. Some days I almost forget Bennett has had over 40 seizures in the last 3 months. Or that it isn't normal for a 10-month old be such a pro at taking medicine from syringes multiple times a day. Some days I can forget the last time he stopped breathing in my arms. The last time he convulsed unconsciously for minutes on end while I held him helplessly. I forget that we have no idea what the rest of his life holds--or ours, for that matter--as far as his health is concerned. I just enjoy watching my baby play with his dog, smile when his dad throws him up in the air, swim in the bath, and other normal baby things.

Other days are harder. Today's a hard day for me. We're weaning Bennett off of the first medication  (Keppra) he was put on back when the seizures first started in July because I'm worried about what the side effects are doing to him developmentally and it doesn't seem like it's controlling the seizures anyway. So even though I feel relatively confident that this is the right thing to try right now, I'm terrified. There's something about being on medicines that feels proactive--even though in reality, he's probably better off without this one. It's scarier to feel like we're not giving him every medicine we possibly can than it is to just keep throwing medicine at the problem hoping something works eventually. 

It's been 2 weeks since we started the slow-wean and I feel like I've gotten pieces of my Bennett back every day. He responds to his name a little more frequently now, he can put himself to sleep without a swaddle most of the time, he eats food again and takes his bottles more easily, and the best thing is that he seems less upset all of the time. But also since we started lowering his dose I feel like all I've been doing for days on end now is staring at him intently--just waiting for the first sign of the impending seizure to start. Every time he's quiet in the car for more than a minute or so, I look back there to make sure his eyes aren't pinned or glazed, that his hand isn't twitching, his head isn't dropping. Every time he strains to poop I hold my breath afraid he's about to turn blue. Every time he hits his head on something, I immediately scoop him up just in case he starts seizing because of it. And every time he gets out of the bath my heart beats a little faster with the fear that we could be about to relive that first night he seized.

He actually hasn't had any withdrawal or rebound seizures since we initially lowered the dose, which is a great sign--except I personally think it bolsters my argument that Keppra was never helping in the first place, and may have actually made his seizures more frequent. But tomorrow night we'll be giving him his last dose and then he'll be fully off of Keppra. Relying on just the Phenobarbital (the second med he's on) to control his seizures. Some people do fine when they come all the way off Keppra--others start to see massive increases in seizures, and we're just sitting right in the middle of not-knowing right now. I guess they can have rebound seizures up to a week or two after the wean is complete, so this ambiguity will continue until then at least for now. 

My friend asked me yesterday what I'm most scared of happening after his last dose tonight. I wasn't completely honest with her because I wasn't ready to say it out loud yet, but I'm terrified that if we can't control the seizures he'll have one that lasts long enough that we can't stop it on our own and he'll end up in the hospital fighting for his life. We've been lucky so far that his longest seizure was just 10 minutes 2 weeks ago and it stopped on its own, but even that was scary because it was an increase from his typical 5 minute seizures. Which means there's a chance they could ramp up and continue to get longer and scarier unless we figure out the right med cocktail to keep them at bay--which unfortunately seems less common the more I research about idiopathic epilepsy at this young age. 

Here's to hoping the Phenobarbital continues to do its job and we don't have to go through any Keppra withdrawals or rebounds after tomorrow night. Wish us luck!