The NEA research team has published its latest paper on the out-of-pocket (OOP) costs of atopic dermatitis (AD) in the U.S. — this time examining OOP costs among caregivers of children with AD compared to adults.
Published On: Jun 19, 2017
Last Updated On: Jul 15, 2021
The memories of caring for my daughter from infancy to toddlerhood lie somewhere deep and treasured in my heart as a journey that we went through as a family.
Marcie is in second grade now and doing well in school. Eczema is more of a “scratching” habit than a medical issue. Her skin is still dry and requires moisturizing, but eczema flare-ups are few and far between.
While I used to share my experiences as a parent of a child with eczema from the perspective of how misunderstood this skin condition was, or how often I would get advice (that was wrong, and at times derogatory), or how little I slept, I think it’s also important to share how I’ve gotten through the darkest moments of caring for Marcie at a time when her eczema was particularly severe.
Her eczema started from 2 weeks old, but we didn’t know it was eczema then. While my spouse had eczema, it was localized and didn’t affect his childhood. In contrast, Marcie’s eczema was all over her face, body, arms and legs.
It came with colic, cradle cap and reflux, which made feeding and sleep a nightmare for the whole family, including my elderly parents who were at the age when they would tire easily and had mild health conditions of their own.
The toughest period was from about 4 months to 9 months of age – a period when the baby was strong enough to scratch and cause damage to her delicate skin, and not quite enough social and motor skills to engage in enough activities for distraction from scratching.
It was also a period of starting solids, and when you didn’t know what the trigger for the eczema rash was, suddenly everything was a possibility (akin to a horror movie when every corner you turned, it could be the “thing”).
Sleep was of course trying. We did our best to keep Marcie cool, moisturized and calm before bedtime. However, after barely two hours of sleep, she would wake up scratching and crying for help. We could empathize, after all, we were crying for help in our hearts.
I was often asked, “So how did you get through it?”
Medically, we were blessed to consult with a caring and experienced doctor, who later was my co-author for the book “Living with Eczema – Mom Asks, Doc Answers.” A proper diagnosis was carried out with a skin prick test. After ruling out any allergy, we were very lucky that a one-time oral prednisolone course worked very well for Marcie, altering her eczema from generalized to localized. Finally, her eczema became manageable.
Emotionally, it was a lot more difficult. If I were to sum up in three points, it would be:
A mother caring for a baby with eczema is like a warrior in the field with new battles to fight (likely the plot lines would rival that of the “Game of Thrones”). We rely on the inner belief that things will get better (and faith could help in times like this) and the determination to try our very best.
But like a warrior, you have battle after battle to face, and you have to take care of yourself. I think determination is easier to exercise when you believe that you are putting your child through the right eczema treatment. For us, working with a doctor who we can trust has helped.
Mothers, don’t let your spouse take a “back seat” and try to do everything on your own. Marriage is for better and for worse, and this is one of those times when you must stand together. As a mother (and quite the task-oriented kind), I often want to be in control and try to do everything myself.
One thing I learned is that my spouse can be there for me. Sometimes we need to reach out to our spouse and share our struggles, and what we hope we can do together to get through this. After all, your spouse is there to offer comfort and strength.
I find it easier to think in terms of quality of life in eczema management. I don’t care about how my baby looks or what others think of her skin. I don’t look for perfect skin, but I consider the quality of life that our family has.
Are we getting enough sleep to go through the next day (or at least taking turns to have some sleep?) Are we happy and peaceful for most of the day? Do we get to go out and enjoy life a little?
I never quite measure my daughter’s skin condition in terms of number of times of flare-ups or topical corticosteroid usage, but rather that we are able to stay outdoors longer than a year ago or have more hours of sleep. At the end of the day, seeing Marcie grow up to be a cheerful girl who has self-confidence makes me proud!
Getting through a difficult period of caring for my daughter has become a treasured memory deep in my heart. It has reminded me that our family can stand together and to have faith in my God and my spouse. Challenges and struggles will come to us in our lives, and this experience has become one of those foundations that lets me know that I’m on solid ground.
Mei is the mother of Marcie (aka MarcieMom), who’s had eczema from two weeks old. Since Marcie’s eczema has improved from about one year of age, Mei has started an eczema blog for parents “EczemaBlues,” co-authored a book “Living with Eczema: Mom Asks, Doc Answers” and illustrated a children book “A to Z Animals are not Scratching!”