Thursday, August 17, 2023

Ready... Set... GO!

Lots of things are in motion and I feel if I don't update now, I'll never catch up. Jenelle has not been doing well at all this summer since starting Xcopri.  Lots of increased seizures, including new seizure types (tonic/clonic aka grand mal) and disturbing new behaviors.  Originally, we were scheduled to have the "Pre-Op" meeting on August 22, and scheduled the Stereo EEG for September 5.  Instead, we met on Tuesday (8/15) with Jenelle's Neurologist, Dr. Steenari and Neurosurgeon, Dr. Olaya. Given Jenelle's increased seizures, they moved up the Pre Op appointment in order to discuss everything.  At the meeting, the team presented us with an option of keeping the Stereo EEG appointment, or just do surgery on that date to insert the RNS device.  

Here is the reasoning for this option.  The seizures that present with Lennox Gastaut Syndrom (LGS) are believed to begin deep within the brain - often in the area of the Thalamus.  So, we could choose to add extra time by doing the Stereo EEG first, giving the doctors a better idea of where to place the leads for the RNS, or just inserting the RNS blindly, but in the vicinity of the Thalamus.  I was ready to get it over with and just insert the RNS, but Brett had some rather good questions, and changed my mind.  

If they simply insert the RNS blindly, and there is a chance that it doesn't help, and they have to do another surgery to re-insert more probes.  Our main reason for not wanting to proceed with the Corpus Callosotomy surgery that is recommended is because it would be "cutting" brain tissue, without exactly knowing if it is the right thing to do.  Brett felt simply inserting the RNS without the Stero EEG would be doing the exact same thing.  He's right! (He'll love me for saying that!)

So, Jenelle is scheduled to be admitted to CHOC hospital on September 5 for the Stereo EEG procedure.  She will be in hospital for a minimum of 3 days, and possibly as long as 10 days or more.  We will be there as long as it is necessary to get the information the doctors need in order to know where to place the RNS probes.  With Jenelle being so unstable of late, we are betting on a short stay, and keeping fingers crossed.

After the Stereo EEG, Jenelle will go home, and can return to school.  They will allow her to "heal" for a couple of weeks, while they review the data.  Then, depending on timing, Jenelle will be re-admitted to CHOC for the placement of the RNS. That surgery will likely be in late September, first week of October.

We are really excited that we are going with the RNS device because we learned that there is a new study going on of LGS patients and the RNS device.  Now that we are doing the Stereo EEG first, it is possible that Dr. Steenari will have time to submit Jenelle's case to see if she can be included in that study so her outcome can help other patients newly diagnosed with LGS.

Scary and exciting times.  Please keep us in your thoughts and prayers and I will of course update here.

Yesterday, Jenelle started the first day of Year 15 at Tustin High School.  She seemed to be very excited to return and see teachers and friends. I worked from home to stay close to school in case anything happened, and got a call from Radiology to scheduled an MRI for Jenelle.  Given that we just saw the team the day before, we were puzzled.  Turns out, they had a cancellation and Dr. Olaya needs another MRI before the 5th in order to help him place the Stereo EEG probes.  I had to pick her up from school and take her to his office so they could turn off the VNS in order to get the MRI.  Jenelle missed out on her bus ride home that she always enjoys.  This morning, we left at 6AM for another sedated MRI.  Jenelle did very well and we are home.  

Here are some photos of the first day of school and of us checking in for the MRI at 6AM today.  

Thank you for continued prayers - I promise to keep you posted!

First Day - Year 15

Jenelle's bus driver and aide

Too early for MRI check in!