05/16/2026
C**ty update…
C**t’s neuro team presented his case at the conference this week. His neurologist called me Wednesday evening to update me on how it went. His case was presented for doctors to discuss which brain surgery they would recommend for C**t, DBS vs RNS. I talked to Dr. Czech for about 45 minutes, so there was a lot we discussed… Here’s the shorter version of our conversation…
As a group they all agreed that there aren’t really any other options for treatment other than trying a brain stimulator. This would not be something that would make him seizure free, but hopefully over time could possibly give him a better quality of life (a cure for C**t has been off the table for a while now, our goal along with his team of doctors is 💯 quality of life, give him the best life possible.)
The group is recommending DBS… this didn’t surprise us at all, his neurologist told me that their group right now is most comfortable with doing DBS for their pediatric patients. She did spend a lot of time explaining the reasons behind why the other doctors believe DBS would be a better fit for C**t, but also said if we felt strongly about RNS, we could still try to go that route. After listening to everything she had to say, and asking A LOT of questions, we ultimately agreed with DBS (deep brain stimulator) the deciding factors for me were the following…
-RNS would require more testing for doctors and insurance to approve… specifically an invasive EEG. Feel free to look it up, but an invasive EEG requires surgery to attach the EEG wires to his brain… it would be extremely uncomfortable for C**t, and does cause many children a lot of pain (they go through multiple layers including muscle in his head when attaching the wires to his brain.) He has a very difficult time tolerating wires attached to the outside of his head with a regular EEG, so his neurologist believes he will absolutely have an extremely difficult time tolerating the invasive EEG… aaaaannnnd would likely pull the wires completely out of his head. 😳 Also, with the RNS I was told he would need brain surgery every 3-4 years to replace the battery… this would be an increased risk for infection… if you’re new, C**t actually had complications from his first brain surgery… meningitis that developed into a large brain abscess… he was inpatient in the hospital from April-July 2020 recovering from the meningitis/brain abscess… the more times we expose his brain, the more chances he has for infection. We do NOT want to experience any type of brain infection/trauma like that ever again… Finally, he can do the DBS now, and still down the road do RNS later, the DBS is much easier to remove than the RNS, so it would not be a big deal to do RNS in the future… so with that, we decided we will do DBS now, and then if that doesn’t help him…. when he’s old enough to be a part of a discussion about RNS, we will include him in that discussion to see if it is something that he wants to try. We’ve had to make a lot of difficult decisions for C**t over the years… I’ve gotten to the point that I feel pretty strongly about including C**t in conversations when considering something as invasive as RNS… right now he’s not old enough to be included in that discussion, so we are going to wait until he is at an age where we can include him, and ultimately he can choose if he wants the RNS.
So our next steps are getting an inpatient EEG and an updated MRI. Now that he no longer has his VNS, we will be able to get the MRI at Mercy in Des Moines. 🙌🙌🙌 We haven’t been able to get an EEG since 2022 thanks to C**t not cooperating in Iowa City… so his doctor decided to let him get the EEG inpatient at Mercy, with the hope that he will cooperate, because he will be in a hospital with staff that he is very comfortable with. I’m 100% sure he will do just fine with the EEG at Mercy, they have a 100% success rate with C**ty’s EEG cooperation. 😁 C**t’s neurosurgeon will also begin the process of insurance approval, and then hopefully get the surgery scheduled for this fall.
