2/24/18: Starting Trileptal, New Baby Sister, and a Helmet!

Lots has happened here in the past 3 weeks. Just 4 days after Bennett's last seizure, baby Olivia decided to come! I went into spontaneous labor with her and she was born 36 weeks to the day. I mostly labored at home because I didn't really think I was in labor (I've been contracting like this for months), but when it had been about 4.5 hours and the contractions weren't stopping I told Dave there was a sliiiiight possibility I might actually be in labor and we headed to the hospital around 11 pm on February 7th.

Thankfully, Dave's mom was here so we could just peace out and know that Bennett was fine and she had everything under control in case we ended up actually having the baby. It took about 3 hours for the triage nurse to be convinced I was legitimately in labor, but we were eventually admitted and my midwife was called around 2am I think. After a short and not very intense labor (until the very very end) Olivia was born around 5am on February 8th! She came out screaming and didn't need any assistance after the birth. She also stayed out of the NICU miraculously, which meant we were able to come home within 36 hours of delivery!

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Just a few days before Olivia's birth, Dave went to see Dr. Morita with Bennett to ask her to write us a prescription for Trileptal (Oxcarbazepine). I tried to ask her to just send it in since I was on bedrest and couldn't really do the appointment and we had already talked about how this would be the next step if we had another seizure, but she made him come in anyway. So we started the generic of Trileptal on Tuesday, February 6th I think?

As far as side effects go--I would say his appetite definitely started to increase after about 2 weeks of being on it. He's finally eating some table food and not just taking bottles! He did seem just exhausted in the beginning. Like too tired to function, but then he'd have insomnia basically and not be able to sleep. But I think that leveled out around a week and a half after starting it (so hard to remember because it was all right after Olivia was born). I haven't noticed any effects developmentally except that he actually did start to take some independent steps about a week after we started it. And he kind of seems like he's babbling more right now (3 weeks in)?

We wanted to start the Trileptal and get off the Zonisamide because I'm worried the Z is holding him back developmentally, but we've been too gun shy to start another wean and risk losing seizure control yet. Especially with the new baby and still trying to adjust to life with 2 under 2.

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In other news around here, Bennett loves his little sister. He doesn't really understand "touch soft", but we're trying to help him understand that he can't hit her in the face. He's very interested in her and likes to be around her when we have her downstairs with all of us. He's a little confused about why her bottles aren't his for the taking, but he's getting used to it. 

He's been walking more and more each day starting about 2 weeks ago when he took his first steps! With this development we decided we needed some head protection from him in case the next bonk on the head triggers a seizure. We found a relatively cute soft helmet on Amazon and he kind of hates it, but has been pretty good about keeping it on for the most part. And it has definitely saved his head a few times already. Who knows if hitting his head would cause a seizure, but for right now, we don't really care to find out. Better safe than sorry.

This week he ate chili, lots of pudding, yogurt, took some bites by himself of a graham cracker, and devoured some of those baby food pouches, plus lots of other mini-successes I'm forgetting right now. This is all pretty huge as he's been struggling a TON with eating real food--even baby food purees for about a month now. My mom has been in town helping for the last 2 weeks and she has basically made it her mission to get him eating table food and doing less formula through the night and day. 

At this point, he has slept about 4-5 nights in a row with NO BOTTLES. This is pretty incredible, because I can't remember the last time we didn't give him a bottle through the night. Actually, I don't think we ever have. He's almost been sleeping through the night no fussing too--but either way, he's self-soothing if he does wake up. She hasn't had to go in very often because he can get himself back down to sleep when he wakes up. I can't even explain how life-changing this is. Of course, we also have a 3-week old baby now to keep us up. But still, 1 baby rather than 2 waking up through the night is HUGE. 

My mom has been taking both of the kids through the night since she got here so Dave and I have had uninterrupted sleep for the first time in a looooooong time, and we are so sad she's about to leave, but so grateful she's been able to help us get Bennett in such a good place. I also think he's leveled out on the Trileptal and that has helped things, but her efforts have for sure been a part of it! 

Hopefully we all survive when she's gone in 3 days....

2/4/18: First Seizure After 3 Months and 5 Days--Restarting the Clock.

Well, this is a hard post to write. Particularly because the last one was so great to write. Yesterday we were 3 months and 5 days seizure free. Today we are back to 0. That's a mental trip. And it's hard. The main thing helping us today is that the Bennett we had this morning pre-seizure seems like the same Bennett who woke up post-seizure, which is not always the case with SCN8A kids' seizures. Our particular epilepsy syndrome is known for unexpected severe seizures causing major regressions in development (some so damaging that kids have woken up and lost years (YEARS) of milestones and are back at infant-level capacities...we're talking can't even hold their own head up anymore).

I was still upstairs when this one started this morning, but Dave had Bennett in his arms when he started seizing and had 911 on the phone within about 15 seconds. Dave's mom has been here helping me be on a modified bedrest (so I don't go into labor too early--35 weeks now!), so she came and got me and I made it downstairs in time to see his second cluster begin, and then a few minutes later, his third. We've never seen 3 back to back. And we've only ever seen him cluster twice before.

I was grateful we had 911 on their way, and they actually made it to our house in 8 minutes, even though I could've sworn it was at LEAST 15....because I felt much less anxious about the times he stopped breathing and turned blue knowing oxygen was on its way. I still don't understand why we aren't allowed to have an emergency med, oxygen, and a pulse-ox at home to be able to administer all of the things the EMT's do in this situation, but that's a different battle for a different day I guess. When they got there I asked them to immediately administer the emergency med they had (per our seizure protocol Dr. Morita has prescribed). They told me they had Versed, and I asked them to give it to him right away nasally. They were clearly taken aback and a little confused that I was so bossy (I can't think of a better word to describe it other than bossy, haha), but they hopped on monitoring his oxygen and getting the emergency med ready quickly, which we were grateful for.

As soon as they got the Versed in him (3 mg), he seemed to rouse from the seizure stupor, and then fall back to sleep. I think it stopped the seizure activity right away, but it's always hard to be totally sure. They kept him on oxygen basically from the time they walked in the door to the time they walked into the hospital out of the ambulance, so his oxygen level seemed to remain stable even after administration of the Versed, which was the big concern since it was our first time using it with Bennett (sometimes it's so strong that it shuts down kids' breathing). And it's really good to know now that at least today, nasal Versed was effective for stopping his seizing.

Dave rode with him in the ambulance and stayed with him at the hospital (no small feat post-seizure) as they ran bloodwork to check for therapeutic levels of Zonegran in his system, run a viral panel for his cold/flu (negative for flu, positive for rhinovirus--so...a common cold), get a CT scan to make sure his head was okay, and overall make sure he was stable. Everything looked clear (like it always does), so they were able to come back home within a few hours, thankfully. We just need to follow up with Morita tomorrow, obviously.

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So this seizure was brought on by a few factors, we think. 1) He's had a cold/sinus infection type of thing for the past few days. I'm pretty sure this lowered his seizure threshold because his immune system was not at its best. I've actually been worried the last 2 days that we might see a seizure knowing how sick he's been. Lots of SCN8A kids (and most epilepsy kids in general, I think?) lose seizure control when cold/flu season hits because it just takes such a toll on their bodies. 2) He tipped over on the hard floor and bonked his head just 15 seconds before the seizure onset, so we're pretty positive it was directly correlated to this (which we have seen with him before, but never been sure if it really was a trigger for him or not). 3) He's off the Phenobarbital, so there's no saying whether or not he would've had enough coverage this morning with it to avoid the seizure, but most of the SCN8A kids can't use monotherapy (one drug at a time) to maintain satisfactory seizure control. Almost all are on at least 2, if not more, drugs at once to gain even just semi-good control. We were hopeful that we may be able to keep him on just the Zonisamide for a little bit to see if maybe he would be okay on just one for now, but...it's looking like that's not the best plan anymore.

Our next steps are to talk with Dr. Morita tomorrow since today is Sunday and it's the weekend. I think we're ready to put him on the Trileptal (supposed to work great for most SCN8A kids with minimal side effects!), get to a therapeutic level, and if we have good control, titrate slowly down from the Zonisamide. It's a bummer to have to do this right now when we are literally one high blood pressure away from being induced with this little girl, but obviously we want to make sure he has better seizure coverage from here on out. The goal is always zero seizures, so we don't wait around for more to happen before we make changes--which is one of the things I love about Dr. Morita. She isn't casual about breakthrough seizures like so many other neuros seem to be. She wants him to be seizure-free as much as we do.

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Overall, Dave and I are feeling pretty bummed, but not surprised, that he had another seizure after doing so well for so long. Dave's mom asked me yesterday "How do you not just live in constant anxiety about when the next one is going to hit??", and I told her that it gets monumentally easier the longer he goes without them. I'd say a few weeks to a month is what it takes for Dave and I to stop freaking out about every little jerk, eye movement, bonk on the head, etc., but the moment the next seizure hits, we restart our clock. I think it actually helps that this time there seemed to be a clear trigger (the head bonk), as opposed to before when they were happening all the time spontaneously with no rhyme or reason. But now of course, I'm hypervigilant about him even tapping his head against anything, which is stressful, and possibly not even necessary, but it doesn't feel worth the risk with what's at stake for him. 

I wish we had maintained seizure-free status through the birth of this baby girl, because I would feel much less anxious being away from Bennett for a few days in the hospital knowing he had gone so long, but that's the thing about SCN8A--it doesn't seem to matter how long you go without a seizure. You can go years seizure-free (definitely the exception more than the rule, but it does happen!) and then randomly have another one out of the blue--no warning signs. This is one of the really difficult things about his diagnosis. We will never really get to a place of stability with him, which means that no matter how long we're seizure-free, we will never feel comfortable traveling anywhere we wouldn't have access to a hospital within minutes, we will never feel comfortable letting Bennett play football, soccer, any contact sports really, long drives with stretches of no hospitals within hours will always present extra stress for us, an we will never know if he'll maintain developmental progress or if he'll lose it all with his next seizure. It's a really ambiguous and out-of-control place to live, which is just super great for Dave and I's personalities....not, haha. It's teaching us to be flexible, roll with the punches, learn from Bennett's resilience, and adjust our expectations constantly for his life and ours. And it's also teaching us to rely on others a little more than we're used to, I think. Every time Bennett has a seizure, we have a huge support system that rallies to love and support us and him--either with words, meals, physical help, emotional support, prayers on our behalf, etc. It's really incredible to constantly be reminded how good people are and how much people believe in Bennett. He's definitely a fighter, even with so much working against him, and I love that so many people are rooting for him. It's been a little (and at times, not so little) silver lining in this very cloudy space we're living in right now, and we are continuously grateful. 

So here's to hoping we can get on Trileptal soon and start to see more control with minimal side effects. 3 months is a pretty impressive streak, but we're going to try to beat it this next time!