Images courtesy of Stephanie Tyner
If I could characterize our daughter’s journey to freedom from seizures, I’d call it a roller coaster of emotions. Thankfully, we felt safe and secure throughout the entire ride, all thanks to our phenomenal care team at Texas Children’s Hospital.
Lauryn – one of our twins – was a spunky, blue-eyed spirit with a completely average medical history, up until kindergarten at least. On a relaxing Sunday afternoon, I noticed Lauryn making strange noises – I couldn’t tell if she was grunting or laughing. We had no idea what was happening to her. For just a moment, I thought she was playing a trick on me! Before I knew it, we were in an ambulance headed to our local children’s hospital. In February 2011, Lauryn was diagnosed with epilepsy.
Unbeknownst to us, Lauryn was suffering from constant partial complex seizures. We soon noticed her case was proving to be a bit more complex than anticipated, so we started researching the top epilepsy hospitals in the nation after a year of local care. We were willing to travel anywhere to get our sweet girl the help she needed. To our delight, we found Texas Children’s Hospital – only five hours away!
We knew Lauryn was in the right place – receiving care from the very best team – when we walked through the doors of the Blue Bird Clinic at Texas Children’s Neuroscience Center. Under guidance from Lauryn’s epileptologist, we tried numerous cocktails of anti-seizure medications. I can easily recall relishing in the brief moments of joy when the medications seemed to be finally working, only to be disappointed by the return of those nasty, inevitable seizures. By this time, Lauryn had moved into our bedroom so we could monitor her activity through the night, every night, recording the time and length of each seizure. As a mother, watching your child seize makes you feel completely helpless. I would witness up to 20 seizures on the most unfortunate nights.
After realizing medication wasn’t the answer, I distinctly remember the first time Lauryn’s epileptologist discussed surgery. I must admit, I cried throughout the entire conversation, because the mere thought of brain surgery as an alternative scared me to death. How could I possibly make this decision for my child? How could removing a part of my precious child’s brain not leave her with a lifetime of disabilities? Once we met with Dr. Daniel Curry, and after much prayerful consideration and research, we decided to let Texas Children’s very experienced epilepsy surgery board review Lauryn’s case.
On June 17, 2018, we turned Lauryn over to Dr. Curry and his team for her first of two brain surgeries – grid placement. We were just shy of Lauryn’s ninth birthday. Nearly 130 electrodes were placed directly on her frontal lobe to identify the exact point of seizure origination. Once this procedure was completed, Lauryn fortunately seized quickly. They were able to confirm her seizure activity was indeed coming from her right frontal lobe. We handed her off to Dr. Curry again two days later so his team could meticulously remove her right frontal lobe, including her secondary motor strip. Then, we waited.
My husband and I found a nice, quiet place to settle down for this long day of surgery. We prayed. We reminisced on stories of our girl’s silliness. We remained optimistically hopeful that Lauryn would return to her love of cartwheels, tumbling, singing and playing with friends. Lauryn’s epileptologist and his team did a great job of updating us on her surgery progress. We couldn’t have been happier to put our eyes on our girl in recovery. She opened those big, blue eyes and said, “Mommy and daddy.” Dr. Curry did his meticulous part. Now, we just needed those prayers to work. We hoped for Lauryn to live a life with at least controlled seizures. Turns out, we were underestimating her progress!
Fast forward to today – Lauryn is now 13 years old, a teenager! On June 19, 2018, our even spunkier daughter joyously celebrated four years of freedom from seizures. She has also been off seizure medication for over two years! Not only is Lauryn back to cartwheels and tumbling – she’s on her junior high school’s competitive cheerleading team, hanging out with her friends like a normal teenager and tackling seventh grade.
While the road to full recovery wasn’t exactly seamless, gone are the anxious nights of careful monitoring. They were only replaced with the regular parental worries that come with leading our vivacious, seizure-free girl through the trials and tribulations of teenage life.
I honestly can’t even begin to express our thankfulness, for everything this hospital has done for Lauryn and our entire family. We truly believe our prayers led us to Texas Children’s, and we’ll forever be grateful to Lauryn’s entire team of specialists. I mean the entire team – from the front desk staff, to the epilepsy monitoring unit, to the rehabilitation floor, to our post-surgery nurses, Peaches and Michelle, for keeping me sane and washing Lauryn’s hair when I was too scared to do it myself.
A quick note from Lauryn:
I am beyond thankful for my care team – Dr. Curry and Dr. Wilfong completely changed my life. I still remember the constant fear I used to experience when a seizure was coming. I also remember how much I despised taking so much medication, every single morning and night. Now that I’m seizure-free, I try my best to educate my friends at school about epilepsy. I’ll continue to bring purple cupcakes to my classmates every November in recognition of National Epilepsy Awareness Month. I still keep my picture with Dr. Curry (in his cowboy boots) on my bookshelf as a constant reminder of just how far I’ve come. My parents always tell me I’m a warrior in the fight against epilepsy. I believe them!
If you're interested in learning more about the Epilepsy Center at Texas Children's Hospital, click here.