Finally, Better Days...

 

Happy New Year!  I apologize that this update is long overdue, but it has some very, very good news.

 At our last update on September 11, 2024, we had a major tweak to the RNS device as we jumped  from a .5 to a 1.5 and we started to see a difference in Jenelle's seizures.  A small difference, but some improvement.  We were still seeing frequent (maybe every third day tonic/clonic seizures (grand mal) and a lot of head drops.  Some of the increased seizure activity was due to illness.  

On Saturday morning of October 19, we had a scary 25-minute tonic/clonic (grand mal) that got Jenelle an ambulance ride to CHOC where she was diagnosed with a UTI.  On a strange, quirky note that "only epilepsy parents can understand" kind of vibe ... we were very out of practice for how to react to this seizure emergency - which means she's been doing well for a while.  I didn't have her rescue medication anywhere near her (or within reach) at the time (she was eating breakfast).  I didn't even start to time her seizure until well past 5 minutes.  I didn't even give her rescue medication (Nysalym) until well after she had been seizing for 15 minutes, which didn't stop her seizure before paramedics arrived 5 minutes later.  Thankfully, the UTI explained the unusually long seizure, and the doctor was able to capture the information from the RNS.  And again, not having been in the practice of using emergency medication, or calling 911 is a very good thing when your child has epilepsy.

 At our next RNS appointment on November 6, the team made another slight adjustment.  And since that adjustment, Jenelle has been an entirely different person.  She is more alert.  More vocal. Happier. Calmer. And is having way, way fewer seizures.  I was keeping tabs with her 1:1 aide at school, our home nurse, and the family, and we all noticed that we had not been using her magnet as much as we used to.  In fact, we estimated that we were seeing weekly tonic/clonic (grand mal) seizures, and head drop seizures every few days.  And we all agreed we were seeing the difference in her behavior and stamina.

Our next RNS Appointment with the RNS team confirmed that we were seeing significant seizure improvement.  So significant that we decided not to make any changes, and keep things the same for two more months.  If things remain the same, we may start weaning medications.  To confirm what we've been seeing, I got to take the following photo of the data the doctor is seeing:

The "Activity" section in the photo above represents the first day Jenelle's RNS was turned on (the far left of the graph) to February 5, 2025 (the far right of the graph.)  The  black lines that you see represent "captured seizures" i.e. seizures that we've marked.  As you can see, as you get closer to the right, you see the "significant" change made in August/November and the obvious seizure improvement.  Pretty cool huh?  Seeing is believing.  It wasn't easy, but I think we are finally seeing significant seizure control, as well as the best quality of life for our girl.

Compared to 2023, our 2024 was a much better year for all of us. As mentioned in the last update, Jenelle aged out of the Adult Transition Program at Tustin Unified School District and her last day was December 20.  The next placement is still undecided as she is on the waiting list for 2 adult day care programs - which means Jenelle is at home full time, which means she needs full time care.  

To complicate the need for that care, Brett works full time at home, and still coaches baseball in Mission Viejo, and I started a new "full time" job in September which requires me to be out of the house from 8am to 6pm.  I now work for the City of Anaheim in the City Attorney's office and as a government employee I am working an 9/80 schedule which gives me every other Friday off.  That extra Friday off has helped in that I've mostly moved all of Jenelle's various appointments to that day.  While we wait for an adult program, Regional Center has increase our home nursing hours so Brett is able to continue to work from home without interruption.  So far, it is working.  Jenelle is content and happy at home, and we make a lot of extra effort to get Jenelle out in the community.  It takes creativity, and a village.

So that is the latest update for now.  For any parent or person with epilepsy considering the RNS... Brett and I would tell you, it is not and easy fix.  We are still half-way to perfect, and went through a lot to get here.  Be ready for a long, long journey... and don't give up easily.

Thank you for continued prayers - I'll continue to keep you posted!