Tips to help you prepare for your next trip on the open road if you live with eczema: planning ahead makes all the difference.
Published On: Sep 12, 2017
Last Updated On: Jul 15, 2021
My daughter Mia was hospitalized several times at C.S. Mott Children’s Hospital to treat her severe eczema in past years. She would go in for four to five days for lengthy treatments that really got her down. She would stop talking and be in tears. We felt so helpless to make things better for her. It was not like a broken arm that would be healed in a number of weeks. She was dealing with a chronic illness that seemingly had no end.
A music therapist came to her room one day and brought a guitar and keyboard and Mia got to sing along. It was like someone flipped the happy switch back on and Mia was able to forget all of her troubles and just be a kid again. The picture above is Mia performing at the hospital (to other sick kids and their families). More on the power of music therapy later.
Thankfully, Mia is better now as we later discovered that the source of her chronic eczema was mold in our basement which we had remediated.
Mia had suffered from chronic eczema rashes for three years that covered 90% of her body and face. She had had very mild eczema as a baby and throughout her childhood with a few dry skin patches here and there on occasion. In the summer of 2013, Mia suffered a severe eczema flare-up like we had never seen before. She had eaten two bags of oranges in the last couple weeks so we thought maybe she had a food sensitivity to oranges or citrus. We later learned that sugars (natural or added) feed mold toxins and often made Mia’s eczema rashes worse.
Thus began a 3-year odyssey of trying to figure out what was causing her skin to itch 24 hours/ day. We went to many doctors to try to figure out what could be causing her eczema skin rashes: pediatrician, dermatologist, allergist, Osteopathic Physician and other natural medicine practitioners. Most prescribed steroid creams, bleach baths, food elimination diets, nutritional supplements but none of them suspected that toxic mold could be the cause. So this story is an important one, not only for eczema sufferers where mold might be the cause, but also for health practitioners to learn about the link between toxic mold exposure and eczema skin rashes.
Mia was miserable for three years. Her eczema affected her quality of life significantly. She was restricted from eating so many things. She could not go out to eat at restaurants without it being a big ordeal or eat birthday treats. Sweating made it worse, so playing on a travel soccer team made her suffer even more despite her love for the sport. Most nights required a 3+ hour routine of trying to get Mia to take a bleach bath, put on her steroid creams, skin lotions, gloves to prevent scratching damage to her skin at night. She hated going to sleep and often got very little sleep most nights (and neither did we).
One summer we went to the Willow Run Airport in Ypsilanti, MI, to watch the Thunder Over Michigan Air Show. Mia was on her dad’s shoulders. It was a very hot day and her eczema was acting up and the skin on her neck was oozing and crusting over from scratching so much. When she went to look up at the airplanes, the skin on her neck cracked and started bleeding and she burst into tears and we had to leave.
Several times Mia came to me and told me, “Mom, I cannot take it any more.” These words are truly heartbreaking for a parent to hear from their child, especially when we feel powerless to do anything. I probably spent 3 hours a day trying to research new insights into what might be causing her eczema or what products or medicines I could buy to reduce her suffering. To see my once vivacious child transform from being on top of the world with no worries in life to one who wanted to check out early at 11 years old was incomprehensible to me. Childhood years should be the best in your life, full of happy times and fond memories.
Even in these dark times, Mia was thinking of others. Her chronic illness made her acutely aware of the suffering of others with eczema. On Mia’s 12th birthday she insisted on generating monetary donations from friends and family to the National Eczema Association’s in lieu of birthday gifts in hopes of speeding up a cure or new treatments for eczema.
In October 2015, my husband Dale went to the basement to get a lightbulb after one upstairs had burned out. While he was down there, he picked up a lightbulb in the cardboard packaging and noticed some specks on the packaging. He inspected it more closely and discovered it was mold. He started doing research to learn more about mold and health effects and learned that mold produces toxic spores that can actually cause toxic poisoning of people who are genetically susceptible.
In addition to severe eczema skin rashes, Mia had also started showing numerous other health problems including: chronic sinus issues, hair loss, extreme lethargy, difficulty concentrating, joint pain, frequent bloody noses, headaches, and sensitivity to light. Some of these symptoms, we later learned, were examples of Stage 2 exposure to toxic mold. Stage 3 exposure included organ failure and possibly death. I shudder to think of what could have happened had my husband Dale not figured out the cause of Mia’s health issues.
We had our entire house remediated by a top mold cleanup company (we had done extensive research to find one that had a strong track record and that used proven methods of effective mold control) in early 2016. It involved moving out of our house for a week and having them remove and replace all of our insulation (including in the attic), removing everything from the basement (especially any paper products which are a food source for mold), dry ice blasting of walls and subflooring, clean up with an ammonia based cleaner to kill the mold (bleach cannot kill mold), having a HEPA filter running 24/7, and replacing sections of drywall.
It was an expensive cleanup and restoration costing around $14,000 but was worth every penny we spent as Mia’s health began to improve immediately and within two weeks or so, her eczema and other health issues were gone. This money came from out of our own pockets since the cause was not a flood issue or water damage issue that might be able to be covered by home owner’s insurance.
The mold in our basement was caused by not running a dehumidifier in the basement. We live near a lake with a high water table and in the summers when the temperatures got hot, condensation collected on the basement walls and created good conditions for mold to grow. We were not aware of this simple precaution.
We now run a dehumidifier that is set to run when the humidity level gets too high and we also run a fan continuously to keep air circulating in the basement. The ideal humidity level is 30-50%. Anything above 60% humidity puts your home at risk for mold growth. Interestingly, in our research we also learned that many schools can be sources of mold as they are closed up in the summers with no air conditioning running. In one of Mia’s classrooms last year, we got the permission of the school to bring in a dehumidifier and air purifier because Mia started to get mold symptoms again and complained that the room was hot, humid, and smelled musty.
While we were still trying to figure out the cause of Mia’s chronic eczema and other health issues, we ended up going to Mott Children’s Hospital in Ann Arbor, MI, three times between 2013-2015. Mia received intensive steroid treatments for her chronic eczema. While at the hospital, we met our hero Jennifer Canvasser who had lost her premature infant son Micah in 2012. He had been hospitalized for months at Mott. He was very ill and during his stay also benefited from the Music Therapy Program.
Here is an amazing article that Jennifer wrote telling her story: “Before My Son Died, Music Mattered More than Medicine.”
After he passed away, Jennifer started an annual benefit concert at the Ark in Ann Arbor, MI, to raise funds for Mott’s Music Therapy Program so that more sick kids (like Mia and many others) can benefit from the program. Meredith, the music therapist that helped Mia, was the first music therapist fellow hired by the hospital thanks to Jennifer’s efforts.
Every year, one Mott patient that was touched by the music therapy program, is invited to sing a song at the Benefit Concert. In 2015, when Mia was 11, she was invited to sing at the concert. I was touched by the level of support at the concert for the music therapy program.
Music is healing. There is a growing body of evidence as highlighted in this article about the healing power of music and the implications of music therapy for improved health outcomes and quality of life for hospital patients. For eczema patients receiving intensive hospital treatments, music therapy would be a welcome addition to help them get their mind off of their suffering.