In honor of Eczema awareness month I asked a fellow eczema mom to share her story here!
Meet Ashley and family:
Ashley Vender is a former consumer packaged goods marketer turned freelance consultant. She is a mother (and Dr Mom) to two children and lives on the Northshore of Chicago. She advocates for eczema awareness and treatment, serves on her son’s preschool board and believes in healthy, active living. She is also a hockey mom, soccer mom, home cook and an eternal optimist.
“Why was I born this way?” The first time my daughter, 5, asked that question, she sputtered out the words between sobs. Her tiny shoulders were curled forward in defeat and her face was pure heartbreak. She was looking up at me from the bathtub, where she was soaking in bleach. It stung her skin, raw from yet another eczema flair. I wanted to cry—for her—too.
We’d just returned home from an emergency allergist appointment. The allergist had examined my daughter for signs of staph, and had once again told us to stay the course with the nightly (awful) regimen: a 10 minute soak in a bleach bath, followed by prescription steroids that also stung, followed by head-to-toe ointment. The morning regimen was more stinging steroids and ointment, and an oral allergy medicine to help with itching.
An emergency allergist appointment was nothing new for us, but this was the first appointment where my daughter was old enough to listen and process what was going on. She realized she wasn’t one of the lucky ones that outgrew eczema by age 5. She realized she wasn’t getting better, that the baths and creams she despised were not going away. She realized that she was different.
I’d realized my daughter was different when she was just days old. I remember asking the newborn photographer if she could retouch out the splotches on my daughter’s face. When friends and family came to meet her, I handed my daughter over with apologies for how rashy she looked. I asked about different creams and ointments and cleansers at every pediatrician appointment. We spent our first family vacation nervously keeping my daughter in the shade because the sun, sunscreen, and pool seemed to turn her even blotchier. By the time she was 11 months old, we’d been through a battery of allergy tests and tried our first (unsuccessful) elimination diet. But still, the red patches came.
We got on 3 month long wait lists with “the best” eczema specialists in the US. We spent small fortunes on “calming lotions” and kept leapfrogging to stronger levels of steroid creams. And still, the red patches came. Then the scratching started. So. Much. Scratching. My daughter stopped sleeping through the night during flare ups. She’d scratch until she bled in her sleep, then wake up in pain. We tried bleach baths for the first time, and adopted a bathing routine so complicated that either my husband or I had to be home from work every night in time for bathtime—no leaving something so important up to a nanny.
We planned family activities around our daughter’s skin. We traveled with our own soap, sheets, towels and enough creams and ointments to cover half the state of Illinois. We sent our daughter to preschool with special lotion and a list of restrictions, and still had an eczema flair so bad she missed a week of school and ended up on the Z-pack. We blew through our health insurance deductibles with rounds of testing and prescriptions that didn’t work. We saw multiple dermatologists, switched pediatricians three times and allergists three times, each time frustrated by the lack of options and ever decreasing quality of life for my daughter. Weeks were divided into “good skin days” and “bad skin days.” But all days were frustrating days. Because our daughter–no, our daughter’s skin–was different.
When my daughter asked that night in the bathtub why she “was born this way,” I had no good answer for why she had eczema, or for why it was so bad. My heartbreak matched hers. But what I did have was a promise. A promise to never stop looking for a solution, to never give up on her. I asked my whole universe (real friends, facebook friends, old coworkers, my entire family) to help me look for alternative treatments. To help me find a doctor that understood the link between eczema and quality of life. And…the universe answered.
My father-in-law (a physician himself) happened to play a round of golf with the inventor of CLn BodyWash. My FIL mentioned our daughter, and the inventor sent us a bottle of body wash to try. It was LIFE CHANGING. It gave my daughter all the therapeutic benefits of a bleach bath, but without the stinging or actual bleaching. Bathtime went from 30 minutes of tears, thrashing, spotted clothes and exhaustion to an easy, sweet childhood experience. And we’ve found that since she tolerates baths better, her skin needs fewer steroids. She is itching less (we think because bleach isn’t drying out her skin as much and that she is in water less) and therefore inflaming her eczema less. Our daughter is happy and she feels NORMAL–finally. We still have flare ups, but we deal with them better now. She attends a public school and has no restrictions. She plays ice hockey, goes to camp and is on a soccer team. And her skin does not hurt. I, as a mother, know I cannot make everything perfect for her always. But it feels pretty damn good to make her feel normal. Normal is enough for now.