From NICU to neurology: Knyle's brave battle with childhood epilepsy

Adarian and Ray Dixon were already familiar faces at Children's Hospital New Orleans. Their journey began with their first two sons, Ethan and Ian, who arrived into the world much earlier than anticipated. As micropreemies, they needed life-saving surgeries and the tender, skilled care of the NICU team. With time, they blossomed into lively boys, leading healthy lives just like any other kids their age. 

Then, unexpectedly, their family story took a new twist. Knyle, their third son, made his entrance into the world at 34 weeks when Adarian's uterus ruptured. Because Knyle was a bit bigger and had spent more time growing before birth than Ethan and Ian, his parents were hopeful that he would face fewer hurdles. 

Life, however, had other plans. Shortly after his birth, the troubling signs of seizures signaled a serious problem. Doctors suspected brain damage had occurred during birth, a concern that cast a shadow over the family's joy. As Adarian was recovering from her cesarean delivery, Knyle was airlifted to Children's Hospital New Orleans, where advanced care awaited, while Ray drove to meet them upon their arrival. 

Lying in her hospital bed, the weight of the situation heavy on her shoulders, Adarian longed for the comfort of home and family unity. “I just wanted to take my baby home,” she expressed, the emotion clear in her voice as she navigated her own recovery while her newborn faced his critical first days apart from her. 

Understanding Knyle’s diagnosis with epilepsy 

Upon Knyle’s arrival at Children's Hospital New Orleans, the Dixons braced themselves for news that would change their lives. It wasn't long before an MRI confirmed the doctors' concerns: Knyle had significant brain damage and was diagnosed with epilepsy. 

Epilepsy is a complex neurological condition that is characterized by the tendency to produce sudden bursts of electrical activity in the brain, known as seizures. These events can lead to a range of symptoms, from brief moments of disconnection from the surroundings to severe and prolonged physical convulsions. The diagnosis of epilepsy can be daunting for families, as it often brings a spectrum of challenges, including navigating health care systems, managing medications and therapies, and addressing the psychological impacts of the condition on the patient and family. For children with epilepsy, there is also the added layer of ensuring their developmental needs continue to be met, making the support of a specialized pediatric care facility like Children's Hospital New Orleans invaluable. 

As the Dixons dealt with the medical challenges of epilepsy, they also had to handle the emotional impact of the diagnosis. Adarian, reflecting on the early moments of receiving this news, shared, “The situation hit us very, very hard. We only knew one other person with epilepsy, my childhood friend. The uncertainty of what this meant for Knyle, his siblings, and us as his parents was daunting.” In a heartwarming twist of fate, Adarian’s childhood friend and her husband became Knyle's godparents, which brought them some comfort amidst their fears. 

Night after night, Adarian and Ray would watch over Knyle through a hospital camera, each moment fraught with the fear of complications. Unlike seizures in adults, Knyle's were different. He was ‘posturing’ – a word that would take on new meaning for the Dixons. It described the distinct movements that Knyle displayed, a clear indication of his epilepsy even if they weren't the convulsions many imagine. 

Ann Tilton, MD, a pediatric neurologist at Children’s Hospital New Orleans, provided critical insight into this condition. “In pediatric epilepsy, seizures manifest in various forms and can often be misidentified due to their subtlety,” Dr. Tilton explained. “Knyle's posturing is indicative of his neurological state, which requires meticulous evaluation and a tailored therapeutic strategy. Our multidisciplinary approach ensures comprehensive management for such complex presentations, aiming to optimize neurological development and quality of life.” 

The hospital quickly became more than just a place for Knyle's treatment. It was a source of comfort and understanding for the Dixons. They had to navigate a new world of medications and medical jargon. The staff at Children’s Hospital New Orleans stood by them every step of the way, transforming them from worried parents to confident caregivers for their son. 

“We found a support system within the walls of the hospital,” Adarian said with gratitude. “The nurses and doctors were not only our son's caretakers, but our teachers and pillars of strength in a time when everything else seemed to be falling apart.” 

After an extended stay in the hospital, filled with careful monitoring and collaborative planning, the medical team and the Dixon family reached a consensus: Knyle was ready to embark on the next chapter of his journey at home. With confidence and comfort in the progress he had made, it was time for Knyle to experience the warmth and love of home life surrounded by his family. 

Six months in: A new challenge emerges 

Just when the Dixon family was getting used to managing Knyle’s epilepsy, another curveball was thrown their way. At six months old, while attending a specialized medical daycare, a nurse – trained in neurology – spotted unusual movements in Knyle. An EEG at Children's Hospital New Orleans confirmed an alarming development: Knyle was experiencing infantile spasms, a different type of seizure than he had before, and one that was affecting him up to 200 times a day. 

“Infantile spasms represent a distinct type of seizure that often begins in the first year of life and can have a considerable impact on a child's neurological development,” said Daniella Miller, MD, a specialist in pediatric neurology and epilepsy at Children’s Hospital New Orleans. “Managing this condition necessitates an aggressive treatment protocol. We initiated ACTH therapy for Knyle, a medication designed to mitigate the spasms by regulating the body's hormone production and acting on specific receptors in the body, thereby reducing the frequency and intensity of his seizures.” 

For Adarian, the treatment plan was daunting. It involved her having to administer a powerful drug to Knyle through injections twice a day, something she had never imagined doing. “It was one of the hardest things I've had to learn,” she shared. “But the nurses were lifesavers. They taught me how to give the injections, practicing on a mock piece of flesh until I got it right. The treatment made a difference. After six weeks of injections, Knyle's seizures began to change. We noticed a drop in his spasms, which gave us a lot more optimism.” 

With the support of the neurology team at Children’s Hospital New Orleans, Knyle recently transitioned off the medication, marking a significant step in his ongoing battle with epilepsy. The journey had been intense, but the Dixons were not alone, and every small victory was celebrated as a milestone in Knyle's brave fight. 

Knyle's growth and a family trip to Jamaica 

Now three years old, Knyle's journey with epilepsy has been marked by tremendous growth and heartwarming milestones. Despite his challenges with being non-verbal and non-mobile, Knyle's world is full of love and learning. He has a keen interest in the world around him, as seen through his interactions with his eye gaze machine, which allows him to communicate in ways that were once thought impossible. His family watches in awe as he learns to read and pop bubbles with just his eyes. 

“Watching Knyle learn and communicate in his own way is very inspiring and incredibly humbling,” Adarian says. The family treasures the memory of his first smile at 10 months old, a moment of pure joy that confirmed for them that Knyle could indeed feel their love and support. 

Knyle's older brothers are his best friends and protectors, learning to interpret his needs and even assist with his medical care. Their compassion and understanding have only grown, as has their advocacy for their younger brother. 

“Knyle’s third birthday was a significant occasion for us. We traditionally celebrate second birthdays in Jamaica, but we couldn’t for Knyle due to his medical condition shortly before he turned two. This trip was more than just a visit to relatives; it was a belated celebration of his second birthday and a joyful acknowledgment of his third. Seeing him enjoy his time there was incredibly special for our whole family,” Adarian shared proudly. 

The Dixon family recently celebrated a big milestone with a trip to Jamaica to visit relatives. This journey, once thought too challenging to consider, became a celebration of kinship and a testament to Knyle's resilience. The family found joy in the successful flight, with Knyle handling the experience wonderfully. This trip signified a substantial and beautiful step forward, affirming their ability to continue cherished family traditions despite the obstacles they've faced. 

Adarian's advice to other parents in similar situations is powerful. “Prayer was the foundation for us; it kept us strong,” she shared. “Don't hesitate to accept help, and always be your child's biggest advocate.” Her experience with Children’s Hospital New Orleans has been transformative, and she encourages other families to find strength in their community and support systems. “The hospital staff always listened to me, and I knew my voice really mattered to the care teams. It made a huge difference for us.” 

For the Dixons, every moment with Knyle is precious. They celebrate his victories, big and small, and continue to navigate the journey of epilepsy with faith, hope, and the unwavering support of Children's Hospital New Orleans. 

More information on the programs that have made a difference in Knyle's care can be found by visiting the Neonatal Intensive Care Unit web page and the Epilepsy Center web page.