Keegan’s Journey
Epilepsy was never an illness I had ever had interactions with, nor had any knowledge of outside what a “typical” seizure is, or at least what the movies show you to be seizures. I, along with most of the public, would hear “they have epilepsy” and think “okay, they just have a seizure,” that’s it and nothing more beyond that. It wasn’t until February of 2023 that our family got a very real dose of what living and caring for someone with epilepsy truly means, and it is so far beyond “just having seizures”.
We have had so much happen in the last 18 months, mostly resulting in the lowest of low points and scariest moments of our lives. We have had to navigate this journey blind and through trial and error, just as many other families with epilepsy are forced to do as well. Keegan suffers from a type of epilepsy called Focal Epileptic Spasms. His seizures are not convulsion seizures like most would view as a “typical seizure”. His seizures (pre-surgery) present themselves as mini 1-2 second seizures that come in clusters that last 3-5 minutes. So, in a 5-minute cluster, he will have a 1-2 second seizure every 5-8 seconds.
These seizures result in his arms shooting up, left leg lifting/kicking, right eye winking and a very loud wheezing sound. However, they did not start like this. Keegans epilepsy progressed very swiftly. Starting with a single arm raise on a random day, to a daily cluster every morning and then finally leading up to his surgery he was having anywhere from 5-10 seizures.
When you are initially diagnosed with epilepsy, the neurologist will explain to you that there are 4 lines/stages of treatment for the seizures, with the end goal being seizure freedom:
Medication – 30% of patients are medication resistant
Ketogenic Diet – 1/3 of patients become seizure-free, 1/3 patients result in decreased seizures, and 1/3 patients see no benefit
Surgery – need a “target” for surgery
Implants
In 12 months, Keegan had trialed and failed 5 medications, 1 prednisone (steroid) treatment, ketogenic diet, had 4 EEG’s, 2 In-patient Video Monitoring EEG’s, 3 MRI’s, 1 PET scan and countless blood tests. That year was full of feelings of hopelessness, despair, grieving, and so many other emotions. It is soul crushing watching your child have seizures all day long and also having 2 healthy young kids to care for on top of your medical warrior child. It forced me to truly focus on my own mental health journey and make sure I am the best I can be to help all 3 of my kids through the difficult moments.
It wasn’t until January 2024 that, after a lot of advocating that they agreed to do another MRI, and they finally found a suspected area they labelled as a cortical dysplasia. It was also at this appointment that our neurology fellow gave us the best insight into how Keegan’s brain activity was: he described it as “if you were watching a movie and someone was constantly turning it on and off. You would never grasp the plot of the movie or any idea of the bigger picture. You are just absorbing snippets. That’s what Keegan’s brain does during the day. Then at night, when you are meant to process and learn the things you absorbed while resting. Keegan’s brain, although not having seizures, is having a party and not allowing him to have that rest.” This insight allowed us to better understand what Keegan’s day-to-day world and processing was like.
From this discovery to surgery everything moved very quickly. They held an epilepsy conference about Keegan at the hospital. This is where they would present Keegan’s case, all of his test results and findings then confer with other neurologists, fellows and neurosurgeons to discuss treatment plans/options. We also were on a waitlist for PET scan which would have the potential to further narrow in the on the target area shown in the MRI. The epilepsy conference had resulted in an agreement that there was a potential cortical dysplasia in Keegans right frontal lobe. The proposal was to perform a Lessionectomy of his right frontal lobe. They would removal Keegans skull, place electrodes directly onto his brain, and resect the areas that were causing the abnormal brain activity. They would repeat this process until hopefully there was no further activity detected on the EEGs. They would then stitch him up and we would spend 5-7 days at the hospital post-surgery.
The neurosurgeon was fantastic and very honest with us in terms of Keegans current situation. He was the first to ever tell us that Keegan’s EEG is “very bad” and that “there is no magic medication that will work for Keegan”. After letting us know all of the potential risks of the surgery and going through surgery in great detail we decided that this was our only option in the hopes of stopping Keegans Seizures. Keegan had his brain surgery March 19, 2024 at 3 years and 5 months old. The surgery lasted 8 hours where they did three separate resections of his right frontal lobe. The surgeon met us outside in the waiting room to explain how the surgery went.
They believe Keegan was having seizures during the surgery which was beneficial in located the best areas to resect. The surgeon did note that there was still extra brain activity when they decided to close Keegan up. They hoped that was just trauma from the surgery that would normalize over time or activity that could be control via medications.
As hopeful as we were that the surgery would be Keegan’s cure it was sadly not; BUT it was not a failure either. He still experiences daily seizures, but they are greatly reduced in frequency and intensity. We are at bit of a standstill in terms of Keegan’s treatment plan. Post-surgery we have noticed a lot of gains in Keegan’s development; learning more words, increased attention span etc. No one feels comfortable disrupting these small development wins that we hadn’t seen since the start of his seizures.
We are back to trialling medications and are due to meet with the surgeon again March 2025 as a 1-year post operation follow up. With there being no target for surgery no one is certain of what the future holds or what other options we have. However, after the year we had I am 100% okay with this pause so we can catch our breathes and really process everything we have gone through as a family.
A lot of people view the surgery as “our finish line” unfortunately that is not the case. He is not cured; we are still having daily seizures. In realty his surgery was the start of his life’s marathon living with epilepsy for Keegan. We can only hope one more surgery will be the answer to stop the seizures completely, but time will tell.