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.
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| Teething up a storm! Cut a tooth yesterday! |
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| 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.
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| Happy baby!! |
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| I love when we see his scrunchy nose smile because that was missing for so long when he was on the Keppra. |
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