“Payton is such a cool kid,” says Roche of her older son. “He is supersweet, super caring about everybody. He loves his friends, and he’s a good big brother.” By comparison, her younger son is more of a wild child. “Nixon is so crazy,” says Roche. “He is strong willed. He’s sweet, but he is feisty.” Both boys have atopic dermatitis, the most common type of eczema, and were diagnosed when they were still in diapers. But their experiences have been very different. What Roche and her husband, Joshua, learned while helping Payton navigate severe eczema has helped them keep Nixon’s skin condition under control.
‘Mom, Why Me?’ Watching as Eczema Impacts Your Son
By the time Payton was a toddler, his eczema became severe. “It was pretty much from head to toe,” describes Roche. “It was on his scalp and all the way to the creases in his toes.” They tried various topical medications, but nothing helped control Payton’s open eczema lesions. For school-age Payton, that meant taking extra precautions. Roche wrapped his skin in gauze to contain the oozing and bleeding and prevent infection. She taped cotton gardening gloves to his hands to stop him from scratching. Roche recalls regularly picking up Payton from school early because his eczema was so bad. As Roche describes it, this affected Payton’s ability to have a normal childhood. “Sleepovers, going swimming, playing in the dirt — just normal things that kids do, he couldn’t do,” she says, “because that meant he likely would get an infection, and it just wasn’t worth it.” She also started seeing signs of emotional stress in him, such as anxiety and depression. “For a really long time, he would be like, ‘Why does God do this to me? Why did God give me eczema? I can’t take this anymore.’” Roche has taken Payton to a counselor and enrolled him in a resiliency program. She’s taught him to focus on his good qualities and how strong he has been throughout his journey. She’s made a point of doing fun activities together. “I tried to do everything to help his mental health, because that was really struggling,” she says.
‘I Was So Overwhelmed’: Eczema’s Impact on the Parent
A parent never wants to watch their child struggle — and Roche was doing whatever she could to help. “I didn’t sleep. I was exhausted. I was so stressed out,” she says. To top it all off, Roche was navigating this all on her own. Her husband is in the U.S. Navy, and when he was deployed, “It was 100 percent solely on me,” she says. “We had so many doctor’s appointments. I was so overwhelmed. I couldn’t have a job, because I couldn’t leave Payton [with anyone else].” The weight of it all and the helplessness of watching her older son struggle became so much that Roche says her own anxiety and depression worsened. “I felt constantly, every day, like I can’t do this anymore.”
A Clinical Trial Offers Hope — and Healing
When Roche and her husband decided to attend their first National Eczema Association expo with Payton, their main goal was to give their older son a chance to meet other kids his age with eczema to help him feel less alone. For the first time, the three of them connected with other families who understood what they were going through. “It was kind of a gamble,” says Roche, “but for how promising it was, we were like, ‘Okay, let’s do it. Let’s take the risk.’” The trial was blind, which means they didn’t know if Payton was getting the medication or the placebo. That is, until about three weeks after he received his first treatment, when his skin started to clear. “We started to see a huge change in his skin,” Roche says. “It was like watching healing happen.”
Taking Back Payton’s Childhood
Before Payton started the trial, his body was about 90 percent covered with eczema lesions, says Roche. Today, he’s at about 30 percent. What’s more, the skin that’s affected is only dry and red, whereas it used to crack and ooze. “I’ll take that any day over what it used to be,” she says.
Two Brothers With Very Different Eczema Journeys
Payton’s little brother, Nixon, started showing signs of eczema as a baby, too. But that’s where the similarities in the boys’ stories end. “Nixon has never seen a day with real tough eczema like Payton,” Roche says. Early on, Roche and her husband enrolled Nixon in a clinical trial for babies for a topical nonsteroidal medication. While successful at first, the medication eventually stopped working. The Roches then decided to try Nixon on a new treatment regimen, even though it meant paying out of pocket. “That’s the thing about eczema,” she says. “Eczema is so expensive.” The good news is, the new treatment regimen worked. Not only that, but it has also allowed Nixon not to require medication every day; he uses it only as needed for flares. Hopefully, things will keep looking up for Payton and Nixon. “My hopes for my boys with their eczema journey,” says Roche “is that it never gets worse than what it is now … that Payton’s never goes back to what it was … and that Nixon never has to know what that’s like.” All images provided by Brittney Roche
