Well, a lot's been happening.
M had a 15 minute myoclonic cluster with a mild illness 10 weeks ago when we were still on 2:1, which was coincidentally the same day he had an appointment with his epileptologist. It is a big deal that the seizure was only myoclonic (imagine one of your limbs getting the hiccups - it's a huge muscle jerk every 30-45 seconds for a while) since those are mild compared to his hemiclonic seizures (one side of his body shaking quickly and rhythmically) and not as bad for his brain, and we didn't use rescue medications on it, so that's great! But as his doctor said, what we really want is no seizure at all with his fevers, so she recommended we increase his ratio again to 2.5:1. We hemmed and hawed and delayed a couple of weeks - in retrospect I don't really know why - but finally made the decision to increase. So we're at 2.5:1 now.
And it's a good thing we did it when we did finally because about three days later, he came down with another cold of some sort, started running a fever again, and... no seizure! Not for nothing of course; we were on top of the motrin/tylenol rotation, we had a nebulizer to keep drainage happening so it wouldn't become an ear infection, and I think we used his klonopin bridge for a night or two. But it worked, and we got through our first ever feverish illness without a seizure. BIG FREAKING DEAL.
So as of two days ago, that puts him at 10 weeks seizure free. This is the longest he's gone since his second seizure. I'm not going to share our next milestone target yet because I don't want to jinx it. But we are definitely celebrating the small victories right now.
We've also had some whiplash on possible changes to his medication (I'll go into that in a separate post), he's changed what he likes to eat so we've changed up our usual recipe rotation and how we construct his meals (also to be elaborated on later), we've discovered he can eat some nuts after all (BIG post about that coming), and most importantly, he is happy and chipper and seems to be making some meaningful gains in walking and talking after not seeing much happen - or even seeing some things regress - over the winter and early spring. Giving his brain a bit of a rest seems to be doing wonders.
There's the high-level update; stay tuned for more!
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