The Battle Against Eczema: A Parent’s Perspective

Effective Care for a Child with Moderate to Severe Atopic Dermatitis

Caring for a Child with Atopic Dermatitis

By Cassie Larkin, as told to Stephanie Watson

A Roller Coaster Ride with Eczema

Treating our son, Kyan, for atopic dermatitis (eczema) has been a wild ride. It all began when he was about 6 weeks old and started breaking out in rashes. We initially thought it was just his reaction to the scorching summer heat, but things didn’t quite add up.

Kyan was a fussy little guy, and switching formulas didn’t do much to alleviate his discomfort. We finally decided it was time to get some answers. After some testing, our worst fears were confirmed – Kyan had eczema, and it seemed like it was here to stay.

Little did we know that this condition would turn our lives upside down. By the time Kyan turned 2, his skin had become a battleground for eczema. We tried every cream, lotion, and ointment out there, even putting him in cotton pajamas and gloves to protect his delicate skin. But alas, nothing seemed to work. We were desperate for a solution.

A Glimpse Into Hell

As a parent, it is heartbreaking when you can’t soothe your child’s pain. Watching Kyan suffer was excruciating. His skin was raw, cracked, and prone to staph infections, which led to hospitalizations. To combat the infections, we resorted to bathing him in diluted bleach, a measure so harsh that it made him scream in agony. But we did what we had to do to keep the infections at bay.

Our days were consumed by a grueling routine. Our nightly eczema routine alone lasted a staggering 2½ hours. We cleaned, medicated, and lotioned Kyan’s entire body, hoping to soothe his inflamed skin. Finally, we dressed him in damp pajamas to bring him some relief and allow him to sleep. Mornings were no better, with a similar routine awaiting us.

We explored various medications, including the immune-suppressing drug methotrexate, which essentially crashed Kyan’s immune system in an attempt to rebuild it. The side effects were brutal, and Kyan had to endure regular blood draws to monitor his kidney and liver health. Our lives had become a constant battle to keep him safe from infections.

Eczema: The Silent Tormentor

Eczema didn’t just affect Kyan physically; it took a toll on every aspect of his life. His inflamed hands rendered him unable to hold a pencil or write properly in school. His constant itchiness and discomfort made it nearly impossible for him to concentrate, leading his teachers to suspect autism or ADHD. It was a vicious cycle – he couldn’t focus because he was so uncomfortable, and the discomfort triggered further teasing from his peers who didn’t understand why he wore gloves or had a blotchy face.

Kyan’s emotional well-being also suffered greatly. The teasing from his classmates combined with the constant scratching and dead skin cells on his scalp led to his teachers constantly flagging him for lice. Each day, he would come home in tears.

Eczema showed no mercy. It continued its relentless assault on Kyan’s life, with no respite or improvement in sight. We knew we had to take matters into our own hands and become fierce advocates for our child. It was clear that our previous efforts had proven fruitless.

A Glimmer of Hope

Thankfully, our journey took an unexpected turn when we were referred to the renowned pediatric dermatologist, Dr. Sheilagh Maguiness, at M Health Fairview in Minneapolis. In her office, exhausted and at our wits’ end, I broke down and admitted defeat.

To our relief, Dr. Maguiness mentioned a new breakthrough treatment called dupilumab (Dupixent) for eczema. She was determined to get Kyan on this medication, which she believed could change his life.

There was just one problem – dupilumab came at a hefty price tag of around $3,000 per injection. We waged a battle with our insurance company for two long years, fighting for coverage since the drug wasn’t initially approved for Kyan’s age group. Finally, in 2020, the tide turned in our favor, and we were able to secure insurance coverage.

From Despair to Freedom

The difference that dupilumab made in Kyan’s life was nothing short of miraculous. Within just three weeks, we noticed a remarkable improvement – no more open sores, no more need for bleach baths or steroid creams. In a few short months, his skin had cleared up completely.

Today, maintaining Kyan’s eczema is as simple as a single bi-weekly injection and applying lotion once a day. We had no idea just how much eczema had consumed our lives until we found relief. The freedom we gained and the incredible improvement in Kyan’s wellbeing took our breath away.

Kyan’s progress, both emotionally and academically, has been nothing short of astounding. He’s now in second grade, thriving in school and forming new friendships. He no longer needs gloves or avoids certain things – he’s just like any other kid. The surge of confidence he now exudes is awe-inspiring. Finally, we were able to take away his pain and make him feel genuinely content. As parents, that’s all we could ask for.

Our hope is that Kyan will eventually outgrow his allergies and atopic dermatitis, though the odds may not be in our favor. Nonetheless, we remain optimistic and keep our fingers crossed. For now, our mission is to offer hope and comfort to other families trekking through this arduous journey. Remember, there is light at the end of the tunnel, and you are never alone. You too can find relief.

Did you battle with eczema or any other skin condition? Share your experience and let’s support each other on this challenging road to recovery.