This post is sponsored by The Pediatric Center at Overland Park Regional Medical Center.
Sophia’s tics began abruptly after her ninth birthday, and once they started, they never stopped. She received a diagnosis of Tourette’s Syndrome approximately one year after the initial onset of symptoms. We were told by most of the various specialists we visited that she would likely outgrow her tics, or at the very least they would lessen in severity over time. Unfortunately, this never happened and they only increased with time.
Over the years, we tried everything we could. We tried all traditional medications and non-traditional treatments, and nothing was working. If you can name it, we have likely tried it. Nothing ever helped in a significant way.
Between 6th grade and 10th grade, Sophia went from being one of the top students in her class and loving school, to nearly having to drop out. During her sophomore year, Sophia missed more days than she attended. If she made it through the morning without me having to pick her up from the nurses’ office, that day was considered a major success. Her tics had increased to the point that it wasn’t just about interrupting class or being embarrassed anymore. It became a matter of personal safety for her, as it was increasingly difficult to walk down the hallway between classes, let alone trying to navigate stairs and crowds of students. In addition to vocal and motor tics, she had several self-harming tics that included punching herself in the face and thighs. These in particular are what made it impossible for her to attend school, whether in person or online.
Her peers and many adults have treated her poorly because of her tics, and this worsened as her symptoms did. Tourette’s is not a disability that is easy to conceal, and because of this and the reactions she received in public, Sophia has had not only her physical symptoms to contend with, but there have been severe mental health consequences as a result. I have watched my daughter lose hope and withdraw from the world around her as a result of her Tourette’s. I have struggled to help her live a more functional life, but nothing I could do was enough. It made me feel like I was failing at the most important job I’ll ever have.
After years of chasing any sort of ‘cure’ or specialist with a new idea, I decided to sell our home in Seattle, Washington, and try something and somewhere new. It was honestly a total Hail Mary play and when people ask why we moved to Lees Summit, Mo., I truly do not have a solid answer. It’s just Sophia and I… we have no family here, and there were no job prospects that led me here. Really the only connection I have to the area is being stationed at Fort Riley over a decade ago and the fact that I graduated from Kansas State University. Clearly, neither of those connections are to Missouri, but for some reason it felt like enough justification for me. I was out of options and too stubborn to give up on my daughter, so I listened to and followed my heart, even though it seemed completely insane at the time.
About one month after we arrived, I found Pediatric Neurologist Dr. Brian Aalbers, with The Pediatric Center at Overland Park Regional Medical Center – a part of HCA Midwest Health. He was our guy, and we didn’t know it. He did something so simple at our first appointment: he stopped and listened to Sophia. He didn’t explain her disability to her like so many previous doctors have on the first visit, and rather than tell her about her symptoms, he asked her about them. I cannot stress the difference that this approach made in the trajectory of her overall treatment. It enabled Sophia to trust her doctor, and for her doctor to better help her. When we got in the car afterwards, Sophia said she felt heard for the first time, and I just cried. To hear her say something positive about what may come was beyond wonderful. That was the day I knew the decision to move here was never really in my hands. It was so much bigger than me.
We tried a few more medications under Dr. Aalbers, and they unfortunately did not help. Rather than stay stuck in the same cycle of medication, side effects, watching her symptoms worsen and her life slip further away, he told us about a procedure that is newer for Tourette’s patients called Deep Brain Stimulation (DBS). Because she trusted him, Dr. Aalbers was able to give her the confidence she needed to try something that was new and scary, but he felt it would help.
Deep brain stimulation works like a pacemaker, but it’s used in the brain instead of in the heart. This technique requires the surgical placement of a small conductor called an electrode in the brain. This conductor delivers electrical stimulation that blocks the nerve signals that cause tics. The procedure is typically offered to people older than age 20, but certain older teenagers may also be candidates, depending on the severity of their symptoms.
We discussed the procedure in depth over several appointments. I was always kept in the loop, but Dr. Aalbers was instrumental in informing and enabling Sophia to make the decision for herself. Having control over her own treatment was the first step towards her living a happy and independent life that isn’t dictated by Tourette’s nor anyone else. For her 16th birthday, we shaved Sophia’s head, and a few weeks after that, she underwent a successful DBS procedure on September 9, 2022 (my 40th birthday!). Hands down, they were the best birthday’s ever.
Her life is now what she makes it, and that is exactly the way it should be. This procedure ended up doing so much more than managing her tics; DBS truly saved my daughter’s life. Her life continues to improve in the most dramatic and positive ways. Her symptoms are a fraction of what they once were. She leaves the house now, her anxiety is being replaced with confidence, she is looking forward to going back to school after the new year, and she is making plans f\or a future she didn’t have just a few months ago. We are so blessed and filled with gratitude to have found Dr. Aalbers and the entire team of specialists and nurses that have helped Sophia get to this point. Our experience has been so positive, and if it can provide hope to anyone else who is going through a similar journey, then sharing our story is the least we can do to say thank you.
Brianna Aranyos and her daughter, Sophia, live in Lee’s Summit, Mo.
When your child is sick or injured, trust the expertise of The Pediatric Center at Overland Park Regional Medical Center to get them back to being a kid again. The Pediatric Center provides an excellent experience for kids and their families who are looking for continuity of care and the highest level of expertise at the bedside. The Pediatric Center offers:
- Comprehensive pediatric services treating newborns to teens
- Pediatric ER with short wait times
- Quick and convenient access to pediatric specialists including cardiology, endocrinology, gastroenterology, general surgery, neurology and orthopedic surgery
- A pediatric inpatient unit for children, which includes a medical-surgical inpatient unit and pediatric ICU staffed by pediatric hospitalists and intensivists, as well as specialty physicians, all with pediatric-specific training
- A Level III NICU, which is the most advanced NICU in Johnson County, offering care for newborns with serious health issues and babies born as early as 22 weeks gestation, also called “micro-preemies”
- All pediatric board-certified attending physicians who are experts in their field and have years of experience treating children
To find a pediatric specialist, call (913) 541-KIDS (5437). To learn more about The Pediatric Center and meet our pediatric specialists, visit hcamidwest.com/pediatrics.
