6 Months - Neurology Update

We made our 6 month pilgrimage to CHOP yesterday to see Maura's neurologist. Honestly, I wasn't sure what to expect. Maura is more than two months seizure free these days. She's thriving, really. So I was really curious to see what Dr. N would say to us. There were no EEGs or MRIs or anything special this time around; just a meeting with the doctor. She sat Maura on the exam table and watched her tracking, played with her grasping, felt out her tone...you know, all that stuff that neuro does. But there wasn't much that I could grasp as we talked about Maura's progress...She ran some numbers on her handy calculator to see where Maura was in terms of meds per kilogram and then we talked.

Maura is thriving. The meds are apparently doing their job, but her levels might be really low. We weaned her off phenobarbital a little over a month ago and saw no repercussions from it. In my mind, I was hoping we'd wean her off another. I guess I just got my hopes up that somehow, we could put this whole business of epilepsy and the NICU and medications behind us sooner rather than later. Now don't get me wrong, I never thought we'd just wean her off the Keppra and the Topamax together because that's just silly...and I suppose I kinda got what I was hoping for: The conversation steered towards a blood draw...to figure out where Maura's current levels stood...and maybe even talk about weaning her off Topamax if that particular level seemed very low...and that's another huge step!




So I pushed a bit farther. I asked where we move from there...if we wean her off this, then what about the Keppra...and I suppose I shouldn't have - for my own sake. My friends, we are talking a few years. YEARS. I don't think I really wanted to hear her say years. I wanted to hear her say "oh....a few months..."

I felt my heart sink at that.

There really would be no quick fix. No pulling her off and moving on by her first birthday....and while I know how far she's come, it was a gentle reminder of how far we've got to go.

As for those levels, I'll update in the next few days when we know more about whether or not we'll be starting another wean...for now, we continue on par for the course we're on. After all, it still seems to be working.