I haven’t updated lately so I thought I would check in and ask for your prayers for Miss Katie. Over the past few months since being in the hospital we have been working through med adjustments, side effects and seizures. It’s been a lot. We decreased a med, stopped a med and added a med. Then seizures increased so we increased the med we tried decreasing. That said, the bloodwork showed her levels of that medication were still very high so we had to decrease it again. The good news is that she is able to walk more because her balance has improved (she was mostly in her stroller for several months because of side effects) but she is having more seizures.

I’ll try to cut to the chase. The likely and hopeful outcome of decreasing medication was less side effects but likely a few more seizures. Unfortunately we went from one seizure every 7-10 days to several a day. Ugh…

I had a virtual appointment with the nurse practitioner this morning. She started a new seizure medicine tonight. These things take time. We will slowly titrate the dose over the course of the next month, get labs again, and see where we land.

So, please keep Katie in your thoughts and prayers. Praying this new medication will give her some relief without any side effects.