Written by Cassie Larkin, as told by Stephanie Watson
Our son, Kian, has been treated for atopic dermatitis (eczema) long lasting. He was about 6 weeks old when we first noticed he was breaking out in a rash. That was in May or June 2013. We just realized he’s sensitive to heat.
Kian was a picky kid. We tried turning him into different formulas, but his skin didn’t improve. Between a flare-up and a rash, we tested it out. That’s when he was diagnosed with eczema.
I had eczema as a kid, but it cleared up pretty quickly. At 2 or 3 years old, my skin was clear. This was not the case for an entity.
By the age of two, his complexion was getting worse. Eczema was everywhere. We tried every cream, every lotion, every ointment. We put him in cotton pajamas and gloves. We rubbed his head with oil to soothe his itchy scalp.
The pediatrician who was taking care of him kept telling us, “This is normal. We have a lot of kids with eczema. Just try these lotions.” But the lotions did not touch the eczema and did not disappear. It was fixed.
take a small piece of you
As a parent, your job is to take care of your children and try to make them feel better when they are sick. When you can’t make them feel better, it takes a little piece of you.
Watching an entity in pain captured a large part of me. His skin was open and cracked. He had to be taken to the hospital due to a staph infection. We bathed him in diluted bleach, which burned his skin to the point where he was screaming and crying, but it was the only way to stop the infections.
Our daily eczema routine used to be two and a half hours. At bedtime, we would shower an entity, then apply ointment all over his body to reduce inflammation, and then apply lotion to seal in that moisture. Finally, we’d put him in wet pajamas to soothe his skin enough so he could sleep. Our morning routine was almost long.
We’ve tried a variety of drugs, including the immunosuppressant methotrexate, which basically smashed an entity’s damaged immune system to try to rebuild it. Every two weeks we had to draw blood to see if the drug was harming the kidneys and liver. We basically had to keep him in a bubble to keep him from getting an infection.
Eczema affected every part of Kian’s life. His hands were so sore and cracked that he couldn’t hold a pencil or bend his fingers to write at school. 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.
Kian suffered not only physically, but also emotionally. The children annoy him. They didn’t understand why he wore gloves to school. They did not understand why his face was so stained. His teachers noticed the dead skin cells on his head and the way he scratched his scalp and kept marking him for lice, which only made the inconvenience worse. Many times he would come home from school crying.
The eczema was relentless. It didn’t stop and it wasn’t getting better. I knew I had to be an advocate for my child. What we’ve tried so far hasn’t worked.
We were referred to pediatric dermatologist Sheilagh Maguiness, MD at M Health Fairview in Minneapolis. She just collapsed in Dr. McGuinness’s office. I said, “I can’t do this anymore.”
When Dupilumab (Dupixent) first came to market, I remember Dr. Maguiness saying, “We need to get Kyan on this drug.”
The problem is that dupilumab is expensive – about $3,000 for an injection. We struggled for two years with our insurance company, which wouldn’t cover the cost because the drug had not yet been approved for an entity age group. Then in 2020, Dupilumab was finally approved and we were able to get our insurance company to pay for it.
Medicine was huge for an entity. We saw results within 3 weeks. There were no more open sores. We stopped having to do bleaching baths and steroid creams. Within a few months, his skin became clear.
Today, we give Kyan one injection every two weeks. And we put the lotion once a day at night.
We didn’t just realize how much atopic dermatitis took up our lives because it was our nature. Finding relief for an entity has been a massive undertaking. It was shocking how much freedom we had and how much better he felt.
Kayan has advanced so much, both emotionally and educationally, that it is almost unrealistic. Now he is in the second grade. He excels in school. It makes new friends. He does not have to wear gloves or avoid touching certain things. He’s like everyone else now. And he has confidence he never had before.
Seeing how Kayan flourished and thrived as a student and as a person was amazing. I was finally able to get rid of the pain. I finally managed to make it okay. That’s all you want for your child, to make him feel better.
Hopefully, Kian will overcome allergies and atopic dermatitis at some point in his life. The chances of that aren’t great, but we keep our fingers crossed. For now, we just want to give the other families some hope and help them see a light at the end of the tunnel and they’re not alone on the journey to get there.