Finding out the fantastic news about our adoption wasn't the only fantastic thing that happened yesterday! Connor had a neurology appointment, and that went really, really well.
His neurologist was thrilled to hear just how well the little guy has been doing in the past few months. During August and September, he's only had four seizures total and three of those were during an illness. That's amazing. The incredible change in the frequency and severity of his seizures that we've seen since Connor started taking Zonegran and we received the anhidrosis diagnosis has been dramatic. He hasn't had a single seizure where he's completely stopped breathing since 2011, and while we've still had to use oxygen his seizures in general have been less virulent-- we haven't had to use Diastat since June!
I got the impression that it wasn't at all what our neurologist was expecting; he told us at an earlier appointment that once you've tried more than three or four seizure drugs the odds of finding one that will work are pretty abysmal. I'm glad that we've found a medication that, while it's not stopping the seizures entirely, is greatly improving Connor's quality of life.
So not only are we going to see the neurologist in six months rather than our usual four, but we're going to start trying to work down off of one of the little guy's seizure medications! He's been on Keppra since he was first diagnosed with seizures, and we're going to start very slowly working him down off of it. He was taking eight milliliters twice a day, and we'll be going down to seven this month, six in October, and so on and so forth until we discontinue the medication entirely in April.
Obviously if Connor's seizures pick back up we'll bump his medication back up, but we're really hoping things will go well and he'll have one less medicine with potentially nasty side effects that he needs to be on. Keppra tends to be one of those medications with a sedative effect, so the neurologist said we might expect Connor to become more alert and aware of his environment as the levels in his system go down.
The little guy tolerated the appointment reasonably well, considering that he has a nasty cold right now and is grumpy and sleepy and sniffly as a result. It's actually been really exciting for me to see him have a cold-- though that sounds kind of weird-- because that's all we've been seeing. He started popping a fever initially but we've been managing it well with Tylenol, so we've seen no seizures. We're not in the hospital. We haven't seen a whole bunch of mysterious symptoms that turn a cold into something much more complicated. It's not four different diseases at once. It's just a cold. This is the first time I can remember in a long, long time that I can say that.
Hooray for colds! Or at least, hooray for just colds. Now if only I can avoid getting it too. I'm not so excited about this cold that I want him to share!
2 months ago