As a seventh grader in Prescott, Arizona, Dylan Knotek was living the life every parent wants for their child. He was healthy, doing well in school, and excelling at his favorite activities, soccer and basketball. “Dylan had energy like you wouldn’t believe,” said his mom, Staci. “Basically, he never sat down –– that’s the kind of kid he was.”
Then came the kind of change that every parent fears. Dylan became suddenly, inexplicably sick. “He started throwing up every morning, and he felt nauseated all the time,” said Staci. Every morning turned into multiple times a day, and by the summer after eighth grade, Dylan was almost completely bedridden for up to six weeks at a time.
Staci remembers one of the worst days, when Dylan was 13 years old. “Our home was for sale and we were having a showing, so we needed to leave the house,” she said. “Dylan was too sick to even stand up. We had to carry him out and put him in the back of the car and he just kept throwing up, over and over.” The family ended up at the emergency department to try to stop Dylan’s vomiting.
Dylan saw some of the best doctors and specialists in Phoenix, and he was eventually diagnosed with cyclic vomiting syndrome. But no medication or treatment was successful in bringing back the happy, high-energy boy Dylan had been.
While Dylan’s parents continued to search for answers, Dylan spent the next two and a half years unable to leave the house, go to school, or participate in the sports he loved. He suffered from daily, severe nausea, vomiting and abdominal pain. “The feeling of having your child, once so vibrant and healthy, that sick is terrible,” said Staci.
When Dylan was 16, one of his doctors in Arizona referred the family to Katja Kovacic, MD, gastroenterologist at Children’s Wisconsin's Gastroenterology, Liver and Nutrition Program. Through clinical trials at the Children’s Wisconsin Research Institute, Dr. Kovacic was pioneering the use of neurostimulation to treat kids with abdominal pain and nausea. There are currently no approved or effective therapies for these disorders in children, and medications are used “off-label.”
Neurostimulation treatment does not use medication, but instead delivers tiny amounts of electrical impulses to nerve branches in the ear through a device placed on a patient’s ear. Trials were showing promising results for kids like Dylan, and word was traveling fast through gastroenterology circles around the country.
Dylan and his mom arrived at Children’s Wisconsin in May of 2018 to participate in a new NIH-funded clinical trial for chronic nausea. They traveled hundreds of miles for a treatment that is actually quite simple. Dr. Kovacic placed the neurostimulation device behind Dylan’s ear and attached several tiny electrodes, about the size of dimes, to the skin with adhesive.
The tiny pulses of electrical stimulation are not even noticeable by most patients. The device stays on for five days, and Dylan almost forgot it was there.
After participating in the clinical trial and an additional few weeks of treatment afterwards, Dylan began making a turnaround. “I remember one day that summer he was swimming in the lake,” said Staci. “It’s such a simple thing –– but he was just feeling normal. He hadn’t felt that way in years.”
By the time the school year began, Dylan, who had received home schooling for more than two years, was able to go to school again for a few hours each day. He also had enough energy to play pickup games of basketball with friends. “That was a game changer,” said Staci. “He got his driver’s license. He can hang out with his friends. These simple things are huge milestones for Dylan.”
Next year, as a senior, he will increase his school day to four hours and maybe even the whole day,” said Staci.
Since 2015, Dr. Kovacic has led research at the Children’s Wisconsin Research Institute using the neurostimulator to treat kids with abdominal disorders. She and her colleagues are still investigating the mechanism by which the device interrupts pain and nausea.
“Although we need more data, the device may stimulate nerves including the vagus nerve, which influence signaling between the brain and the gut,” said Dr. Kovacic. “We believe the stimulation actually remodels or distracts the brain sensations of gastrointestinal discomfort, resulting in a reduction of pain and other symptoms.”
So far, the treatment has been proven effective for pain and overall well-being in adolescents with functional GI disorders. “Our current trials are investigating the effects on nausea and vomiting, with Dylan being one of the subjects,” said Dr. Kovacic.
There’s a network of families of kids like Dylan whose abdominal illnesses are hard to treat. Desperate for help for their kids, these parents share their hopes, troubles and solutions, and word has spread quickly about the success of neurostimulation treatment at Children’s Wisconsin. “Many of these families have found that medication doesn’t work for their kids, or has difficult side effects, and are looking for ways to get relief,” said Dr. Kovacic.
Dr. Kovacic gets many referrals from families who have heard about her research and treatment through online support and chat groups. Families from Iowa, Georgia, Texas, Tennessee, Michigan, Illinois and more are traveling to Children’s Wisconsin to receive the treatment. It’s not yet covered by insurance, and families have resorted to everything from GoFundMe campaigns to lobbying insurers in order to get neurostimulation for their kids. “When your kid is that sick, you’ll do anything,” said Staci.
But that’s about to change. “With more and more validated, peer-reviewed research on neurostimulation coming out of the Children’s Wisconsin Research Institute, the U.S. Food and Drug Administration (FDA) recently approved the use of auricular (ear) neurostimulation for irritable bowel syndrome. I am hopeful its use for nausea and vomiting disorders such as cyclic vomiting syndrome will be close behind,” said Dr. Kovacic. “This is a huge win for these kids and for the quality of life of them and their families.” The next step after FDA approval is usually insurance coverage.
In the meantime, families like Dylan’s are grateful that the innovative treatment at Children’s Wisconsin is helping kids, who’ve been so sick for so long, feel better. This summer, Dylan’s greatest hope isn’t anything earth-shattering. “I’m planning to do a lot of swimming and fishing,” he said. “And that’s going to feel really good.”Children’s Wisconsin annually invests significant funds in cutting-edge research efforts to help improve the lives of children and families. However, government funding is more limited than ever before, and donors often provide critical seed funding for research in its early stages. Help us help kids like Dylan by donating today.