I cannot believe my son Cole is in college. My baby boy, who was diagnosed with atopic dermatitis at 12, is all grown up.
Life has moved quickly for us since Cole’s diagnosis. Our family lived in 3 different states while we searched for relief, visiting every specialist in the area associated with his condition. As I look back at the different medications and healthcare providers we’ve tried, I can’t help but wish I could teleport back in time. I’d give my younger, more inexperienced self some advice on dealing with atopic dermatitis.
Anybody dealing with a chronic condition will encounter a steep learning curve at first, but I don’t think I realized how steep it would be. Here are four things I wish I’d known when Cole first received his diagnosis.
It is important to take the diagnosis seriously. My son had his first flare after a roller hockey game. His entire body—from neck to toes—erupted in red, oozy, swollen bumps that itched and burned painfully. We rushed him to a doctor, who gave him steroids and topical ointments. As frightening as that was, I assumed then (incorrectly) that this would be a one-time thing, like a broken bone. We’d get Cole help. He’d heal. Then we could all get on with our lives. The first doctor we saw didn’t tell us that Cole had a chronic condition. It wasn’t until our third or fourth doctor that we heard the term “atopic dermatitis” and were told that this wasn’t going away. I didn’t understand that with that first flare, everything about our world was going to change. I wish I had known that.
Aggressively pursue and assemble the right medical team. Ask them if they take calls after hours, how many patients with eczema they currently treat, what the normal procedure is, and if they are willing to collaborate with other specialists. Some doctors told us Cole wouldn’t be able to engage in his favorite activities—those specialists got a hard pass from me. Don’t be afraid to bring specific questions and be sure to follow up afterward. It’s like dating—discovering communication styles and personalities. If the relationship isn’t compatible, it may be time to move on.
Never go to an appointment empty-handed. Caregivers should bring their questions, a notepad, and something to write with. To this day, if Cole is home on break and we go to the doctor together, I bring a list of concerns with me and make sure we leave with them answered. I document everything obsessively—dates, times, diet, dosages, and activity.
Engaging with a community is vital for those dealing with atopic dermatitis. It doesn’t have to be in person—there are some wonderful support groups online. This includes family, friends, and especially those who know, have, and understand eczema. Community can make a big difference.
I wish I could go back in time and tell myself these 4 things earlier in our journey with atopic dermatitis. While I cannot change the past, I am able to impact the future. I hope that by sharing these four tips, I can help your family on your chronic health journey.