Dave and I were pretty sad and disappointed that he had a seizure because he'd been off the Keppra for two weeks at this point and we hadn't seen any, so we were hopeful that he maybe wasn't going to seize again. We both felt like we were finally at the point where we weren't watching and waiting every second of every day for his next seizure, and after this one we went right back to that :(. On the other hand, we were pretty sure that this meant he was still having seizures and we didn't necessarily need to do a nocturnal EEG anymore, which is great because that was going to be quite an ordeal for all of us. Since it was the weekend and we knew we wouldn't be able to get ahold of Dr. Morita until Monday, we decided on our own to start him on the Zonegran (Zonisamide actually) the next night. I wanted to wait 24 hours at least because I wanted to be able to identify if he had any regressions in his development or skills after the seizure, and didn't want to attribute it to the medication if it wasn't because of it.
We were both pretty nervous to start this new medicine--I think to say we've been a little traumatized from the whole Keppra ordeal would be an understatement. Our biggest fear is that we'll start to lose Bennett again (his personality, his cognitive development, motor skills, etc.) when we've seen such humongous progress lately and are feeling really hopeful about his prognosis. We started on 10.29.17 with a compounded liquid formula that insurance won't cover, but will be significantly easier to administer, so we feel like it's worth it. We are supposed to start with 1 mL the first week and increase by 1 mL each week until hitting the therapeutic dose at 4 mL/day.
It's been a little over a week now and I'm relieved to report that we have been pleasantly surprised by the effects of the Zonegran! The first night he took it he slept better than he has in months. He only woke up once through the night which was heaven, and he didn't wake up screaming bloody murder like he had been doing lately. It was really only just yesterday I realized that whenever I've watched him on the monitor this week he hasn't been twitching--at all. When we came off the Keppra I was noticing twitching almost constantly throughout the night, and then there was always that 1:30 am wake up where it looked more seizure-like. I wonder if the Zonegran is actually stopping nocturnal seizure activity and that's why he's finally sleeping better. I guess we'll never know since we didn't get the EEG before starting the medicine, but it is NOT worth taking him off now to see if the twitches come back. I'm pretty convinced he was having some kind of myoclonic activity, just because he sleeps so much deeper and sounder than we've ever seen. He actually wakes up happy about 50% of the time too! He's NEVER done that!
Every time I go in and see him smile at me and be happy to be awake I just feel like it's another one of those things about parenthood that everyone takes for granted unless they don't have it. I didn't even realize how big of a difference it makes to have your baby smile at you when you walk in the nursery rather than scream and cry nonstop. But...it makes a big difference--to say the least.
In addition to feeling like the medicine has helped his sleep and improved his mood a lot, our other success this week with Bennett was that in the car last weekend we were asking him to wave (we've been trying for months with no response) and he actually did it!!! He was intentionally imitating us! Dave and I both just cried again when we saw him waving at us over and over again. Just these little things we've been too afraid to hope for, so when they surprise us, the joy and relief is a little overwhelming.
I've had a resurgence of my nausea from the Hyperemesis Gravidarium this week, unfortunately, so it has been a huge blessing that Bennett has been in such good spirits. He's able to play independently on the floor while I lie on the couch watching him, which is so helpful when I feel too sick to move. We upped his dose 2 days ago and if anything he just seems happier so we're crossing our fingers this keeps up and he remains seizure free! We're feeling pretty happy with his progress right now and are just loving having a smiley baby who actually wants to interact with us and other people. It's so nice to see the flicker of a smile at people in the store who smile at him. It's kind of a funny experience actually, to feel like these strangers have no idea how happy it makes me every time I see him make eye contact and smile at them. They just think he's a normal baby and smiling is something he does without thinking. They have no idea that there was a time I was worried he would never learn to smile back at people, and how reassuring it is to watch him enjoy the interaction. I guess it just goes to show that you never know what battles people are fighting, so it's always best to be kind and supportive. I hope I continue to remember that even if we make it out of the woods with Bennett and get to a stable place of "normalcy" with him. Kindness and support from family, friends, and strangers have made all the difference since this all started. And that feels like the greatest understatement of the century.
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