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On Lucy’s. eighth birthday, she woke up to a surprise. It wasn’t a cool toy or a fun game, the kind of things kids often look forward to on days like this.
Instead, her back and stomach itched so badly she was crying.The small rash on her back spread quickly, while Lucy endured more misery and discomfort. According to her father, the young girl said, “Daddy, if this is living, I don’t want to live anymore.”It was clear to her family that Lucy was suffering. What was the source of this sudden attack?The answer: a common preservative found in personal care products like body wash and shampoo; there’s a good chance you could walk into your bathroom right now and find any number of bottles that contain it.
It’s called methylisothiazolinone MI, and it made Lucy’s life hell for more than four months.A Long, Uncomfortable Road To The Truth. Reactions like Lucy’s to MI are statistically rare, but examples are not difficult to find. There is, for example, a Facebook group for those who are sensitive to MI (as well as related preservatives isothiazolinone and methylchloroisothiazolinone, but more on those later) that has upwards of 4,500 Facebook followers. Symptoms can include redness, dryness, a burning or stinging sensation, facial swelling, blisters and crusting.“She basically didn’t sleep It was like having a newborn, but a newborn who could talk and tell you just how miserable they were.”Like most people, Lucy’s parents hadn’t heard of MI at the end of April 2014, when Lucy’s troubling rash first appeared. It took four months for the family to determine the culprit, an entire summer of watching Lucy struggle not to scratch between appointments with doctor after doctor.“It was awful,” Lucy’s father John. told Consumerist.
“Maybe the first month, she basically didn’t sleep. She’d fall asleep for 45 minutes it was like having a newborn, but a newborn who could talk and tell you just how miserable they were, and there’s nothing you could do.”Treatments ran the gamut of hospital-administered steroids to oatmeal baths. “You name it,” John said, but nothing seemed to be working and physicians could not explain the rash’s cause.The search began with Lucy’s pediatrician who, according to John, said Lucy’s was the “worst rash she’s ever seen.”Adding to the difficulty was the fact that the rash covered Lucy’s entire body from the neck down.“You couldn’t see her skin,” he explains. “When they were trying to do blood tests, they couldn’t find the vein because they couldn’t see through the skin, it was covered with red bumps.”After Lucy’s pediatrician, John says they tried a pediatric dermatologist and a slew of other specialists: an allergy immunologist, infectious disease experts, geneticists and rheumatologists. Lucy’s chest was X-rayed to rule out Hodgkin’s, another scare her parents were forced to endure.“We had no idea what was causing this.
She’s suffering, we’re wondering does she have some kind of chronic condition?” John recalls.As Lucy tells it, living with the rash was a constant battle for the eight-year-old.“It’s like my body was telling me to scratch and I couldn’t resist it,” Lucy told Consumerist, after her parents said we could speak with her. “I couldn’t think against it. It was like a voice inside my head saying, ‘Scratch it! SCRATCH IT!’ I couldn’t resist it because I couldn’t think back at it and tell it not to.”In an attempt to rule out a gluten-intolerance issue, Lucy’s parents had her avoid foods with gluten for months.
Not a winning idea, especially for an 8-year-old who loves pizza.“Because they thought that gluten was causing the rash, I had to stop eating gluten!” Lucy told Consumerist. “Which was like the one thing that made me feel better a little.”The only positive, she says, was that she somehow didn’t get any of the rash on her face.Finally, around the beginning of June, Lucy’s doctors prescribed powerful oral steroids and her discomfort lessened, even though the rash lingered. For months it still remained too severe for doctors to perform a patch test.
A patch test involves applying different allergens to the skin in a controlled way and then monitoring the tested areas for reactions. The catch is that you need enough healthy skin to test, and Lucy’s entire body was covered with the rash.When enough of Lucy’s skin was clear, her family went to see Dr. Vincent Deleo, then the head of dermatology at St. Luke’s Roosevelt in Manhattan. According to John, Deleo tested Lucy for sensitivity to around 70 different allergens and, at last, finally reached a conclusion: Lucy had a severe response to methylisothiazolinone.At home, her parents tracked down the source of the MI — Suave Kids Body Wash, a product made by Unilever and marketed as “hypoallergenic” and “safe for kids’ delicate skin.”“Our hypoallergenic, ophthalmologist-tested Suave Kids® Free and Gentle Body Wash is dye-free and will not irritate your child’s skin,” the product description reads, in part. “Made specifically for kids’ skin, it helps make bath time tear-free.”Lucy would probably disagree with that part about the tears.
Lucy’s back.Upon realizing that methylisothiazolinone was causing Lucy’s awfully itchy symptoms, the family stopped using the Suave body wash — and the rash quickly cleared up. Finding the source was a huge moment, says John, even though it was hard to believe that the culprit had been sitting in their bathroom for all of these months, and that Lucy had been using it during her months-long ordeal.“It was such an extraordinary relief,” he recalls. There’s a good chance you’ve never heard of MI or noticed it on product labels, but the chemical is increasingly being used as a preservative.Cosmetic and skin care products have long used a class of preservatives known as parabens, but with some consumers calling on manufacturers to discontinue the use of parabens because of alleged long-term health concerns, Dr. Despite some complaints linking MI to rashes, the chemical is so widely used that you’re likely applying it to your skin and hair on a regular basis.After first talking to John about Lucy’s ordeal, I immediately looked in my bathroom to check my Suave shampoo and conditioner. The front and back labels for the Suave product Lucy had been using when her rash appeared.
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