The Larkin family’s battle with atopic dermatitis, a skin condition, started when their son Kyan was only a few weeks old. For the next seven years, every day was a struggle.
The constant itching, rashes, open sores, and skin infections made everything from playing outside to bedtime miserable for Kyan. Severe infections often led to hospital visits for the family. Part of Kyan’s treatment included nightly bleach baths, which were excruciating for little Kyan, stinging and burning his broken skin.
“When you get into severe atopic dermatitis, it doesn’t stop. It’s an all-day, every day battle,” said Kyan’s mom, Cassie Larkin. “We tried oatmeal baths, bleach baths, every ointment, every medicine, everything we could do. Not being able to take away the pain, or make it better, was the hardest thing I’ve experienced.”
When Kyan was 2 years old, his pediatrician referred the Larkins to Pediatric Dermatologist Sheilagh Maguiness, MD, FAAD, at M Health Fairview University of Minnesota Masonic Children’s Hospital.
“Atopic dermatitis is the most common chronic inflammatory skin condition we treat, affecting about 20% of children nationwide at some point,” Maguiness said. “If we can treat the condition early, intensive topical treatments can be effective. But by age 5, the body’s inflammatory response has been going on for so long that it becomes less likely that children will outgrow their skin disease.”
Over the next few years, Maguiness tried every treatment available, including those that suppressed Kyan’s immune system. Though his symptoms sometimes improved, the condition always came back. In addition to the physical pain, Kyan endured teasing from kids at school, who made comments about his red and scabby skin and made fun of the special cotton gloves he had to wear each day to help protect his skin from infection.
At the same time, dupilumab, a promising new treatment for atopic dermatitis, was going through the Food and Drug Administration (FDA) approval process for adults. After reviewing clinical trial data that showed the medicine was safe and effective, Maguiness was determined to get Kyan access to this new treatment.
“Having more experience with the severe and complex atopic dermatitis patients puts our team in a unique position to use advanced therapies before other general or community-based dermatologists,” Maguiness said. Finally, in the summer of 2020, the family got the news: Kyan was approved for this treatment.
For the past six months, Kyan has been receiving injections at home twice a month. His sores are gone, his skin barrier is complete, and his skin – once damaged and thin – is finally healing.
“It’s beyond words how incredible this drug has been for Kyan,” Cassie said. “I feel like I’ve finally done my job as a mom.”
Cassie credits Maguiness for getting Kyan access to the medicine as soon as possible, despite insurance-related hurdles. “She was truly a warrior. She made every phone call, wrote every letter, to get Kyan approved for this drug, knowing it would be a game-changer for him. I can’t thank her enough for all the work and all the effort she put in to help Kyan.”
Today, Kyan is a happy second grader who loves playing outside – something he couldn’t do before without risking infection. His ability to hold a pencil and write – once painful and difficult – has improved dramatically, and he is flourishing at school.
“This new, FDA-approved therapy works remarkably well and can take the burden off of families in so many ways,” Maguiness said. “The quality of-life impact cannot be understated. These new, leading-edge biologic therapies have changed so many kids’ lives for the better. We’re proud to be able to offer the best possible treatment options at M Health Fairview and to tirelessly advocate for our patients and their families.”
“I felt right away that we were in the right place,” Cassie said of her experience with Maguiness and the care team at M Health Fairview University of Minnesota Masonic Children’s Hospital. “We were never just a number. They had my son’s life in their hands, and every member of the team surrounded him with love and care.”