Thursday, May 11, 2023

2022 went by in a FLASH! New Year update!

NOTE:  I started drafting this in January and here it is May.  A lot has happened in our family in the last 4 months including the death of our niece (Jenelle's cousin) Kiersten Curran, and my Mom (Jenelle's Nana.)  It has been a lot to endure.

I will update on that soon, but in the meantime I wanted to finish and post what I had to say in January - Thank you for your patience. ~Kelly


Wow, so much has happened this past year, which passed by insanely fast in my opinion.  Jenelle continues to do well on Fintepla.  If you recall, we had been considering three different surgical options before starting Fintepla.  Corpus Callostomy, Deep Brain Stimulator (DBS) and the RNS. Jenelle was doing so well seizure wise on Depakote, Fintepla and Felbamate that we felt we had an opportunity to try to decrease her medications instead of surgery, keeping the idea of surgery in our back pocket just in case.

At our appointment in late July, we decided to wean her off Depakote.  We started very slowly, taking a total of 22 weeks to wean her off with the last dose given the day after Thanksgiving.  As we got closer to the end of the wean in late October, we unfortunately started seeing an increase in drops.  Knowing that a wean can make things worse before better, we stayed the course.  

In October, Jenelle had an overnight EEG at CHOC.  We wanted to confirm that the increase in seizures were the same that we have been unable to control as opposed to something new because of the decrease in Depakote.  The good news from that EEG was that we were seeing the same type of seizrues, and had room to increase her Felbamate.  So, before we finished the Depakote wean, we increased Felbamate and unfortunately, but didn't see much help.  

So right now, we are trying to figure out the next step.  We are seeing less side effects with the Fintepla / Felbamate combination, but still too many seizures.  As Jenelle approaches 21 in October, we will also be moving away from CHOC and toward adult doctors and hospitals.  Lots of changes to consider and I will keep you posted once we make some decisions.