Caring for a kid with reasonable to extreme atopic dermatitis

By Cassie Larkin, instructed to Stephanie Watson

Treating our son, Kyan, for atopic dermatitis (eczema) was onerous work. He was about 6 weeks previous once we first observed he had rashes. It was Could or June 2013. We simply thought he was warmth delicate.

Kyan was fairly a tough child. We tried switching him to completely different formulation, however his pores and skin wasn’t enhancing. Between irritability and rashes, we had it examined. That is when he was recognized with eczema.

I had eczema after I was a child, however bought over it fairly shortly. By the age of two or 3, my pores and skin had cleared up. This was not the case for Kyan.

By age 2, her pores and skin was solely getting worse. Eczema was in all places. We tried each cream, each lotion, each pomade. We put him in cotton pajamas and gloves. We rubbed oil on her head to appease her itchy scalp.

The pediatrician taking care of her saved telling us, “It is regular. We’ve got many kids who are suffering from eczema. Simply strive these lotions. However the lotions did not contact the eczema and it would not go away. It was fixed.

It takes a bit piece of you

As a mum or dad, your job is to maintain your kids and attempt to make them really feel higher when they’re sick. When you’ll be able to’t make them really feel higher, it takes a little bit of you.

Watching Kyan undergo took a giant toll on me. Her pores and skin was open and cracked. He needed to be hospitalized for staph infections. We bathed him in diluted bleach, which burned his pores and skin so badly that he was screaming and crying, however that was the one option to cease the infections.

Our every day eczema routine was 2.5 hours. At bedtime, we might bathe Kyan, then apply ointment throughout his physique to cut back irritation, then placed on lotion to seal in that wetness. Lastly, we dressed him in moist pajamas to appease his pores and skin sufficient for him to sleep. Our morning routine was nearly as lengthy.

We tried a wide range of medication, together with the immunosuppressive drug methotrexate, which principally destroyed Kyan’s broken immune system to attempt to rebuild it. Each two weeks we needed to do blood checks to see if the drugs was damaging his kidneys and liver. We principally needed to hold him in a bubble to stop him from getting an an infection.


Eczema affected each side of Kyan’s life. His fingers had been so infected and cracked that he could not maintain a pencil or bend his fingers to write down at school. And he was so itchy and uncomfortable that he could not listen at school. His academics thought he might need autism or ADHD as a result of he could not focus, however he could not focus as a result of he was so uncomfortable.

Kyan suffered not solely bodily, but additionally emotionally. The children teased him. They did not perceive why he wore gloves in school. They did not perceive why her face was so stained. His academics observed the lifeless pores and skin cells on his head and the way in which he scratched his scalp they usually saved pointing him out for lice which made the teasing even worse. A number of instances he got here house from faculty crying.

The eczema was relentless. It did not cease and it did not get higher. I knew I needed to defend my baby. What we had tried thus far didn’t work.

We had been referred to pediatric dermatologist Sheilagh Maguiness, MD at M Well being Fairview in Minneapolis. I simply cracked up in Dr. Maguiness’s workplace. I mentioned, “I am unable to do that anymore.”

A brand new hope

When dupilumab (Dupixent) first got here in the marketplace, I keep in mind Dr. Maguiness saying, “We’ve got to place Kyan on this drug.”

The issue is that dupilumab is dear – round $3,000 per injection. We fought for two years with our insurance coverage firm, which didn’t cowl the price as a result of the drug was not but authorized for Kyan’s age group. Then in 2020 dupilumab was lastly authorized and we had been in a position to get our insurance coverage firm to pay.

The medication has been enormous for Kyan. We noticed ends in 3 weeks. There have been no extra open wounds. We stopped needing to do bleach baths and steroid lotions. Inside months, her pores and skin was clear.

At present we simply give Kyan a shot each 2 weeks. And we apply a lotion as soon as a day, within the night.

We did not notice how a lot atopic dermatitis had consumed our lives as a result of it was our normality. Discovering aid for Kyan has been enormous. It is surprising how a lot freedom now we have and the way a lot better he feels.

Kyan has progressed a lot, each emotionally and educationally, that it is nearly unreal. Now he’s in second grade. He excels at school. It creates new friendships. He does not must put on gloves or keep away from touching sure issues. He is like everybody else now. And he has a confidence he did not have earlier than.

Seeing how Kyan has blossomed and blossomed as a pupil and as an individual has been spectacular. I used to be lastly in a position to take the ache away. I used to be lastly in a position to restore it. It is all you need on your baby, to make him really feel higher.

Our hope is that Kyan will overcome allergy symptoms and atopic dermatitis in some unspecified time in the future in his life. The chances of that occuring aren’t the most effective, however we’re retaining our fingers crossed. For now, we simply wish to give hope to different households and assist them see that there’s a gentle on the finish of the tunnel and that they aren’t alone within the journey to get there.