Kelsey does not have good seizure control right now and at her 6-month visit with the neurologist this past week he decided to try her on Potiga. She’s taking a relatively low dose to begin with so we have some wiggle room but after a week of it, neither she nor I can tell a huge difference in the seizure activity so far. He also wants to transition her to an adult neurologist and at nearly 21 – it’s time. BUT it’s hard to leave a facility and a physician that you’ve been with for so very long and through so much with. I know that we would have to switch eventually, but actually hearing it was difficult.
More difficult, though, was having him tell us that after Potiga, there’s really nothing else at this point that we can do for her. There’s no drug we haven’t tried, no surgery or implant that we don’t already have, and sadly, nothing new on the close horizon. I know I’ve said this before, but as a mom, those words just sweep my feet out from under me. My heart hurts for Kelsey and all she endures, but more importantly my soul sings for her because of how well she does handle it all.
I’ll update more after we’re on the full dose of Potiga.