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.
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