This is a sponsored post about atopic dermatitis: I was compensated by Med-IQ through an educational grant from Sanofi Genzyme and Regeneron Pharmaceuticals to write about the signs, symptoms, and treatments available for atopic dermatitis or eczema. All opinions are my own.
If you’ve followed this blog for a while, you’ll remember that, back in September, I introduced you to 8-year-old Elizabeth and chronicled her atopic dermatitis (AD) treatment journey. Elizabeth is the third child of my dear friend Carla and she’s one of the kids on our street that I’ve known since the moment Carla breathlessly told me in the school parking lot that baby #3 was on the way.
Because everyone loves a sequel, I’m happy to report that I caught up with Elizabeth and Carla a few weeks ago to check in with Elizabeth’s progress and treatment journey. And I can report that this sequel is not going to suck: without giving away too much, too soon, let’s just say Elizabeth was only too excited to tell me about her most recent visit to her big city allergy and dermatology specialists.
Elizabeth has moderate-to-severe atopic dermatitis and, as you can imagine, itching from the inside out is not high on the list of things 8-year-old aspiring YouTubers want to do. When she and I sat down in September, masked and socially distanced, to talk about what life was like with atopic dermatitis, she told me that the hardest part of living with AD is that adults and kids can be cruel.
“I wish people would understand that if she could control the itching and the lesions, she would. She doesn’t have any control over what her skin does from day to day,” her mother told me.
Let’s review some quick stats about atopic dermatitis:
More than 31 million Americans have some form of eczema and around 16.5 million adults in the US have atopic dermatitis, with 6.6 million reporting moderate-to-severe symptoms.
10% to 25% of children have atopic dermatitis; of which, approximately one-third have moderate-to-severe disease
5% to 10% of adults have atopic dermatitis (3% of elderly); of which, approximately one-third have moderate-to-severe disease
Although atopic dermatitis most commonly develops early in life, it can persist into adulthood for many patients. (In fact, I spoke with Dr. Peter Lio, Clinical Assistant Professor of Dermatology and Pediatrics for Northwestern University during a Facebook live. Watch HERE.)
Here are a few other facts about AD:
Atopic dermatitis affects all races; however, it is more common among Black children and Black and Hispanic children are more likely to experience more severe cases.
Atopic dermatitis is most commonly associated with other allergic/atopic conditions such as allergy, asthma, hay fever, and food allergies.
Atopic dermatitis is also associated with several mental health conditions including ADHD, anxiety, and depression.
Perhaps the most poignant part of our conversation back in September came when Carla simply looked at me and said, “You almost just want to put a sign on your kid that announces she’s not contagious because people look at her with raised eyebrows in public. I wish people would understand that if she could control the itching and the lesions, she would. She doesn’t have any control over what her skin does from day to day.”
Now for the sequel…
When I asked her about Elizabeth’s treatment journey with atopic dermatitis, Carla detailed a long and winding road to what has ultimately become a solid eczema plan of treatment options for Elizabeth.
Via FaceTime, an exuberant Elizabeth proudly announced to me that she’s feeling better than she has in months. “My eczema is so much better!” she beamed.
Carla was quick to point out that building an eczema plan that centered around Elizabeth’s needs has been the key to their ongoing treatment success. But it’s not been an easy road to the current skin regimen that Elizabeth follows today. And, while Elizabeth’s skin lesions and irritations have been improving, something as simple as the weather turning colder and using the heat in the house can cause her skin to dry out quickly.
“Having a child with atopic dermatitis means doing constant detective work. If she’s having a flare up, we have to retrace our steps and figure out whether she’s had milk (which causes her to flare up) or if it’s something as simple as getting nervous and sweaty before a test at school,” Carla explains.
“When her symptoms first started, we worked with our family doctor and Elizabeth would take rounds of oral steroids,” Carla explained. But, she says, as you can imagine, the steroids would work for a short period of time and Elizabeth’s symptom relief would quickly drop off after a few days off of the steroid dosage.
Eventually, Carla took Elizabeth to see a local allergist where, for about a year, they tried a combination of steroid creams and ointments several times a day. Carla detailed often frustrating visits with the doctor where Elizabeth was made to feel like she was “failing” at her treatments. “I’d find myself feeling upset. The doctor would almost be yelling at Elizabeth because the treatments weren’t working and she’d insinuate we were doing it all wrong.”
An Eczema Plan is born
Not long after, Carla and her husband sought treatment at a large children’s hospital in a nearby major city. And, with some trial and error and meeting with doctors who were skilled in the latest treatments for AD, that’s when Elizabeth finally started to turn the corner.
Carla cannot stress enough that patients look for a healthcare provider who is a partner with them in their treatment journey. She says that finding a clinician who asks for your preferences, discusses your prior experiences, and partners with you to develop an eczema action plan makes all the difference.
When they started working with their AD specialists, Elizabeth’s team started on the first rung of the treatment ladder: gentle skin care treatments, using soaps and cleansers that are oil-based, do not contain preservatives, and moisturize the skin. Carla was previously told to avoid all soaps and cleansers and Elizabeth’s new doctors helped them identify the products that would be the best for bath time and bathing.
Next, Elizabeth’s doctors focused on the second step in the therapeutic ladder: topical corticosteroids. These options are best for mild or moderate atopic dermatitis or in combination with systemic therapies for more severe disease. Moving up the ladder can be necessary for moderate-to-severe atopic dermatitis patients.
These days, Elizabeth uses a mix of a steroid cream and a moisturizing lotion three times a day. Before bed, she bathes and uses what’s called a “wet wrap” for two hours after she applies her topical steroids. The “wet wrap” is a set of cotton clothing that Carla wets down and Elizabeth wears while watching TV before bed time. “As you can imagine, bed time takes a long time these days, from beginning to end,” Carla jokes.
Long term treatment plans are on the horizon
And, while Elizabeth is making progress, Carla shared that they have an appointment in January to discuss the third rung of the atopic dermatitis treatment ladder: systemic therapies (moderate-to-severe atopic dermatitis). One treatment option for these patients is nonspecific immunosuppressants, such as systemic corticosteroids. However, these can cause rebound flares and multiple adverse effects with long-term use.
“Her doctors think she’s a good candidate for the immunotherapy treatments and we are going to explore the options available to her,” Carla shared. Newer systemic agents are now available and approved by the FDA that target the underlying causes of atopic dermatitis, including the factors that cause itch and inflammation.
For now, though, Elizabeth is enjoying being symptom-free and she’s been able to more closely focus on what what’s really important when you are 8 and trapped at home during a pandemic: her budding YouTube channel and writing a chapter book with her mom.
If you’d like more information about eczema and atopic dermatitis, head to American Academy of Dermatology’s Eczema Resource Center: www.aad.org/public/diseases/eczema
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