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 come a long way. He was about 6 weeks old when we first noticed he was getting rashes. That was May or June 2013. We just thought he was sensitive to heat.

Kyan was quite a picky baby. We tried switching him to other formulas but his skin didn’t improve. Between the excitement and the rashes, we got him tested. At that time he was diagnosed with eczema.

I had eczema as a baby, but I got rid of it pretty quickly. By the age of 2 or 3 my skin had cleared up. This was not the case with Kyan.

By the age of 2 his skin was getting worse and worse. The eczema was everywhere. We’ve tried every cream, every lotion, every ointment. We dressed him in cotton pajamas and gloves. We rubbed oil on his head to soothe his itchy scalp.

The pediatrician who looked after him kept telling us, “This is normal. We have many children with neurodermatitis. Just try these lotions.” But the lotions didn’t touch the eczema and it didn’t go away. It was constant.

It takes a little piece of you

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

Seeing Kyan suffer took a lot out of me. His skin was open and cracked. He had to be hospitalized for a staph infection. We bathed him in diluted bleach, which burned his skin so badly he screamed and cried, but it was the only way to stop the infections.

Our daily neurodermatitis routine lasted 2½ hours. Before bed, we bathed Kyan, then applied ointment all over his body to keep inflammation down, and then applied lotion to lock in moisture. Finally we dressed him in wet pajamas to soothe his skin enough for him to sleep. Our morning routine was almost as long.

We tried a variety of medications, including the immunosuppressive drug methotrexate, which basically crashed Kyan’s damaged immune system to try to rebuild it. We had to have blood drawn every two weeks 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

The eczema affected every part of Kyan’s life. His hands were so sore and cracked that he could not hold a pencil or bend his fingers to write at 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 concentrate, but he couldn’t concentrate because he was so uncomfortable.

Kyan suffered not only physically but also emotionally. The children teased him. They didn’t understand why he wore gloves to school. They didn’t understand why his face was so mottled. Noticing the dead skin cells on his head and the way he scratched his scalp, his teachers kept tagging him for lice, which made the teasing even worse. He often came home from school crying.

The eczema was unrelenting. It didn’t stop and it didn’t get better. I knew I had to be an advocate for my child. What we had tried so far didn’t work.

We were referred to pediatric dermatologist Sheilagh Maguiness, MD, at M Health Fairview in Minneapolis. I’m currently in dr. Maguiness’ office collapsed. I said, “I can’t do this anymore.”

New Hope

When dupilumab (Dupixent) first came out, I remember that Dr. Maguiness said, “We need to administer this drug to Kyan.”

The problem is that dupilumab is expensive — around $3,000 per injection. We fought for 2 years with our insurance company, who would not cover the costs because the drug was not yet approved for Kyan’s age group. In 2020 dupilumab was finally approved and we were able to get our insurance company to pay for it.

The medication was huge for Kyan. We saw results within 3 weeks. There were no more open wounds. We no longer needed bleach baths and steroid creams. Within a few months his skin was clear.

Today we only give Kyan an injection every 2 weeks. And we apply lotion once a day in the evening.

We hadn’t realized how much atopic dermatitis had engulfed our lives because it was our norm. The relief for Kyan was enormous. It was shocking how much freedom we have and how much better he feels.

Kyan has grown so much both emotionally and educationally that it’s almost unreal. Now he is in the second grade. He’s excellent at school. He makes new friends. He doesn’t have to wear gloves or avoid touching certain things. He’s like everyone else now. And he has a confidence that he didn’t have before.

To see how much Kyan blossomed and prospered as a student and as a person was impressive. Finally I could take the pain away. I was finally able to please him. That’s all you want for your child to make them feel better.

We hope Kyan will grow out of allergies and atopic dermatitis at some point in his life. The odds 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 that there is light at the end of the tunnel and they are not alone on the way there.