The world of pediatric EEG is indeed its own world, with its own set of unique challenges that extend well beyond the technical aspects of recording brain activity. Children can especially have increased anxiety about unfamiliar equipment and also find it difficult to remain still during the procedure. These challenges are even greater for children with developmental, behavioral, or sensory concerns. Fear of the neurodiagnostic technologist and the environment can therefore become the greatest barriers to a successful study.
Waves the Brave, a child-friendly teddy bear with EEG electrodes represented on its head, is doing his best to help technologists do their job by keeping patients calm before and during testing. His design is a story of many stakeholders—led by a passionate mom from Exeter, NH— who came together in pursuit of doing better for patients, families, and neurodiagnostic technologists.
It Began With “Mom-Gut” Instincts
This endearing bear’s genesis is rooted in the creativity, compassion, and tenacity of Kate Kostolansky—epilepsy advocate and founder/CEO of Brave Bears Club. Her daughter Charlotte was almost 2 when Kate, working as a full-time hospital administrator at the time, noticed something was awry. It started with a subtle head bob or an arm jerk. “It didn’t sit right in my mom-gut,” said Kate, who videoed the movements. “It was a little too involuntary.”
Realizing Quickly the Importance of EEG Testing
Kate asked for a referral to a neurologist, who watched the videos and immediately recognized the presentation as infantile spasms (IS), a type of seizure known as epileptic spasms. The first step was to get an EEG, with continuous monitoring required at home.
Neurodiagnostic technologists are charged with accurately measuring the head, prepping the scalp, and applying electrodes to precise locations on uncooperative pediatric patients. Even small changes in electrode placement can affect the recording, and the unfamiliar sensations, equipment, wires, and prolonged setup can make compliance difficult for the child. The EEG recording is altered by movement, crying, or touching electrodes, and all of these actions can prolong the procedure and compromise quality.
“This was one of the worst experiences of our life—the wires, the bandages, lots of trouble with the set-up,” Kate expressed. “We were concerned with accuracy. I had doubts. It was all so convoluted. Even with the best of the best [neurodiagnostic teams], this would’ve still been really hard.”
Nonetheless, Kate realized fast that the EEG is imperative. “You really need the data from it to move forward. And it’s usually not a one-time thing. It was so important to me that it was done well.” Driven by a mama-bear instinct and problem-solving nature and knowing that serial EEGs were going to be a new constant for Charlotte, Kate knew there had to be a way to make the process easier and better for all involved.
Identifying Solutions
“I never set out to create a product. I just wanted to support my daughter and other families going through the same difficulties,” she shared. “It is a fractured, lonely, and overwhelming experience. It’s traumatizing watching a child get a repeated procedure that they hate.”
First came a self-published book. “I wanted to explain to Charlotte, her teachers, and peers what it might look like if she was having a seizure,” said Kate. The only books on the market at the time were high-level and good for elementary-aged children. But Charlotte and her peers were younger than that and needed something very simple and “not scary.” Kate’s book achieved that—and performed well on Amazon.
Involving Technologists
Later, a child life specialist and EEG technologist were showing Charlotte how electrodes work by putting tape on her favorite stuffed animal, a pink poodle. Seeing how well Charlotte reacted to this interaction, Kate wanted to find a stuffed animal that had a specific and more sophisticated EEG component to it. When she couldn’t find that, Kate built a prototype for Charlotte.
Waves the Brave Bear came to life through a lot of input—especially from neurodiagnostic technologists. During the design and refinement phase, Kate remembers one technologist who was particularly excited and honored to be included in the process, distinctly saying: “No one ever usually asks us.”
That stuck with Kate.
“Every person on the care team is a stakeholder,” she said. “If anyone is looked over, then that begins the fracture in care. They [the technologists] are dealing with scared patients and questions; they’re on front lines, pummeled from all angles.”
What if they could give patients a bear? What would it look like? When would it be presented? How would it be used?
Ultimately, Kate had to make several prototypes, including one to show manufacturers. All of the bears are sensory, slightly weighted, hypoallergenic, and certified to be in a hospital. Children’s Hospital of Atlanta was among the first to order, buying approximately 50 bears. Then Johns Hopkins.
Improving Patient Cooperation & How the Technologist is Perceived
According to the Clinic Courage pilot study at Boston Children’s Hospital, 94% of caregivers reported that Spike (one in a line of Brave Bears Club EEG comfort bears), along with additional child-friendly and comfort resources, improved pediatric patient cooperation during the EEG, helping support a smoother and less stressful visit overall. Anecdotally, technologists have reported how much they appreciate being able to give something special to the child and to the family. This way, the technologist is not just seen as the person with the “scary wires,” but also as a source of comfort who can then be more positively perceived during future tests.
A Movement Toward Holistic Neurodiagnostics
Photo Credit: Boston Children’s Hospital
Today, Brave Bears Club partners with hospitals, nonprofits, and families nationwide, delivering books, comfort bears, EEG kits, and child-friendly education resources in more than 75 hospitals. One of Kate’s goals is to see the bears be implemented into a standard of care, especially as more research is done that could potentially show direct correlations among bear usage, testing accuracy, and patient outcomes.
“As a mom, I definitely wanted the best for my child, but I also really understood the clinical side. It is so difficult for clinical teams to support their patients with all the limited bandwidth,” said Kate. “Epilepsy is extremely nuanced and not something that is highly supported or funded at hospitals. I felt it was important to do something helpful to patients and families and clinicians. The hope is that everyone can work together to create a more supported, standardized experience for patients.”
Learn more at bravebearsclub.com.
