11.14.17 Week 3 on Zonegran

Well, we have upped Bennett's Zonegran to 3 ml of compounded liquid a day now (started 2.5 weeks ago) and we feel like we're almost back in the Keppra days! The first night he was up from about 2:30-6:00am and then just awake for the day after that. The second night he did much better and slept through after his midnight wake-up. But during the days he has just been screaming and crying, so clingy, and only wanting to stand. I can't leave him anywhere alone and I can't even really set him down without a total meltdown. This wouldn't be such a big deal except for the fact that I contract literally every time I bend over, pick him up, or crouch down. And the contractions are getting painful at just 24 weeks, unfortunately. Looking at 16 more weeks of this is daunting...

We reallyyyyy hope this is just the adjustment period for the Zonegran because we cannot live like this again. Now that we've had our happy Bennett back for a while, I don't think we'll ever be able to go back to the Bennett who's upset all day long for no apparent reason. Ibuprofen isn't even helping this time so we're pretty sure it's not just teething. I almost think he's just completely exhausted...like too tired to function. But of course he's so tired that he's having a hard time self-regulating to sleep. Had to bring out the good ole swaddle again this week...(please no one report me to DCFS, I realize this is not a super safe sleep habit at his age, but there is literally NOTHING else that gets him to sleep--and we check on him regularly with the video monitor).

Luckily, he hasn't had a seizure since the day we started the Zonegran, so at least we're seeing control. But once we wean the Phenobarbital that'll be the real test. Pheno just controls the seizures SO well, but we can't keep him on it knowing it is causing developmental delays and cognitive slowing. Apparently Zonegran can do that to some kids too, though, so I don't know what we're supposed to do.

The first step is to get to the therapeutic level of Zonegran on Sunday (today's Tuesday), then we meet with Dr. Morita on Wednesday to talk about treatment plan and starting the Pheno wean, then we watch to see if Zonegran can control his seizures alone. If it doesn't, I wanted to try Lamictal next because I take it for mood stabilization and have had no noticeable side effects, so I figured we might as well give it a shot for Bennett. But after reading more about SCN8A, Trileptal seems to be a miracle drug for a LOT of kids, plus we will be candidates for medical CBD with THC at that point, so we'll probably get started on that. It's supposed to really help sleep issues and counteract the cognitive issues as well. I wish we could get him on it sooner, but it's quite a process to obtain it legally here in Utah.

Overall we're just feeling a little nervous that the Zonegran may be introducing side effects we can't handle right now an we would hate to have to start over weaning and titrating another medicine...it's like a never ending cycle of trial and error!

This was how upset he was because I had to take a shower for 5 minutes this morning...:( His little wipe of his eyes! So exasperated, haha.