Caring for a Child With Moderate to Severe Atopic Dermatitis

By Cassie Larkin, as told to Stephanie Watson

Treating our son, Kyan, for atopic dermatitis (eczema) has been a long haul. He was about 6 weeks old when we first noticed that he was breaking out in rashes. That was in May or June of 2013. We just figured he was sensitive to the heat.

Kyan was a pretty fussy baby. We tried switching him to different formulas, but his skin wasn’t getting any better. Between the fussiness and the rashes, we had him tested. That’s when he was diagnosed with eczema.

I had eczema as a baby, but I grew out of it pretty quickly. By age 2 or 3, my skin had cleared. That wasn’t the case for Kyan.

By age 2, his skin was just getting worse. The eczema was everywhere. We tried every cream, every lotion, every ointment. We put him in cotton pajamas and gloves. We rubbed oil onto his head to soothe his itchy scalp.

The pediatrician who was handling his care kept telling us, “This is normal. We have a lot of kids with eczema. Just try these lotions.” But the lotions weren’t touching the eczema and it wasn’t going away. It was constant.

It Takes a Little Piece of You

As a parent, your job is to take care of your children and try to make them feel better when they’re sick. When you can’t make them feel better, it takes a little piece of you.

Watching Kyan suffer took a big piece of me. His skin was open and cracked. He had to be hospitalized for staph infections. We bathed him in diluted bleach, which burned his skin so much that he would scream and cry, but it was the only way to stop the infections.

Our daily eczema routine was 2½ hours long. At bedtime, we would bathe Kyan, then apply ointment all over his body to keep the inflammation down, and then put lotion on to seal in that moisture. Finally, we’d dress him in wet pajamas to soothe his skin enough so that he could sleep. Our morning routine was almost as long.

We tried a variety of medications, including the immune-suppressing drug methotrexate, which basically crashed Kyan’s damaged immune system to try to rebuild it. Every other week we had to get blood draws to see if the drug was damaging his kidneys and liver. We basically had to keep him in a bubble to prevent him from getting an infection.

Relentless

Eczema was affecting every part of Kyan’s life. His hands were so inflamed and cracked that he couldn’t hold a pencil or bend his fingers to write in school. And he was so itchy and uncomfortable that he couldn’t pay attention in class. His teachers thought he might have autism or ADHD because he couldn’t focus, but he couldn’t focus because he was so uncomfortable.

Kyan suffered not only physically, but also emotionally. The kids teased him. They didn’t understand why he wore gloves to school. They didn’t get why his face was so blotchy. His teachers noticed the dead skin cells on his head and the way he’d scratch at his scalp and they kept flagging him for lice, which made the teasing even worse. Many times he would come home from school crying.

The eczema was relentless. It wasn’t stopping and it wasn’t getting better. I knew I had to be an advocate for my child. What we had tried so far wasn’t working.

We were referred to pediatric dermatologist Sheilagh Maguiness, MD, at M Health Fairview in Minneapolis. I just broke down in Dr. Maguiness’s office. I said, “I can’t do this anymore.”

New Hope

When dupilumab (Dupixent) first came on the market, I remember Dr. Maguiness saying, “We need to get Kyan on this drug.”

The trouble is, dupilumab is expensive — about $3,000 an injection. We battled for 2 years with our insurance company, which wouldn’t cover the cost because the drug wasn’t approved yet for Kyan’s age group. Then in 2020, finally dupilumab was approved and we were able to get our insurance company to pay for it.

The medication has been huge for Kyan. We saw results within 3 weeks. There were no more open sores. We stopped needing to do the bleach baths and steroid creams. Within a few months, his skin was clear.

Today, we just give Kyan one shot every 2 weeks. And we apply lotion once a day, at night.

We hadn’t realized just how much atopic dermatitis had consumed our lives because it was our normal. Finding relief for Kyan has been huge. It’s been shocking how much freedom we have and how much better he feels.

Kyan has progressed so much, both emotionally and educationally, that it’s almost unreal. Now he’s in second grade. He’s excelling in school. He’s creating new friendships. He doesn’t have to wear gloves or avoid touching certain things. He’s like everybody else now. And he has a confidence he didn’t have before.

Seeing how much Kyan has blossomed and flourished as a student and as a person has been awe-inspiring. I was finally able to take the pain away. I was finally able to make him OK. That’s all you want for your child, to make them feel better.

Our hope is that Kyan will outgrow the allergies and atopic dermatitis at some point in his life. The chances of that aren’t the greatest, but we’re keeping our fingers crossed. For now, we just want to give other families some hope and help them see there is a light at the end of the tunnel and they aren’t alone in the journey to get there.