Paige Silcox of Nashville, Tenn., clearly remembers the moment that she knew she needed to find answers for her son, Davis, who was struggling with food allergies and eczema.
“We were in the car, and I was telling him not to scratch,” she says. “And, he told me that he hated his body and wished he had a different one.”
There had been countless heartbreaking and terrifying moments for Paige and her family as they dealt with Davis’ conditions – when she was told she had to stop nursing, when the immunologist told her that her son was “very sick,” or when his day care called and told her that Davis wasn’t breathing.
“One of the earliest things that I remember was when a friend came to visit me with her baby. I had forgotten how velvety a baby's skin was supposed to be and how wonderful it was just to be able to stroke your baby's cheek or arm while you're nursing or cuddling them,” Paige says. “It hit me that Davis was rarely touched that way, almost never stroked or kissed. People didn't try to eat my baby's cheeks or toes.”
Davis was also missing out on a lot of normal childhood experiences. “We never went to a restaurant because most places couldn’t accommodate him,” she says. “His whole life, I’ve known every ingredient that has gone into his body.”
The eczema was wreaking havoc on the entire family, causing sleepless nights. “Davis never slept through the night in his entire life,” she says. “He would wake up with bloody clothes from the scratching.”
Going to National Jewish Health
Paige had heard of National Jewish Health, but the travel costs of a 10-day appointment were too daunting. After the moment in the car, Paige was determined to get him to Denver.
Through a fundraiser at a friend’s restaurant and an online campaign, they raised the money they needed for the trip.
Davis came to National Jewish Health for 10 days, where he was seen in the Pediatric Day Program, a unique, comprehensive program in which patients and their families participate in appointments, disease management and therapeutic activities throughout the day.
Throughout this ordeal, Paige has met many doctors. “The doctors and nurses at National Jewish Health were hands down some of the best. They knew what we were going through. I didn’t have to explain everything, they understood how his problems affected our entire lives.”
Davis’ eczema was treated with “wet wrap therapy,” where he had up to three hour-long baths a day. After each bath his skin was covered in lotion or topical steroid medication, and then he wore dressings made of clothing that were soaked in warm water with a dry layer applied on top. Paige had tried wet wraps on Davis when he was an infant, but their experience at National Jewish Health was different.
“You can’t learn from reading about it,” she said. ”It was so helpful to have a medical person do it, and show me how much medicine to use so that I know I’m not going to harm him.”
Next, Davis underwent a food challenge, a test that was developed at National Jewish Health and is considered the gold standard for diagnosing food allergies. He was fed small portions – a gram or two at a time – of certain foods. This approach allowed doctors to pinpoint the foods that Davis was allergic to, and exactly how much he could tolerate before showing signs of a reaction.
They found out that Davis was allergic to dairy, eggs, sesame, peanuts, cashews and pistachios. Importantly, they learned that he was not allergic to many of the foods he had been avoiding. In addition to the medical treatments and tests, Davis participated in art therapy and Paige attended group parenting sessions.
“Now I have a plan. I know what to do to keep his skin from getting so bad. We have our maintenance routine to move forward from here and several tiered steps of treatment for when he flares up,” she says. “We have a plan to share with his school for what they can do to help and pages of documentation to share with his doctors so they can seamlessly continue his care.”
‘Our New Life’
Davis has had so many new experiences since coming to National Jewish Health – petting a kitten for the first time, eating at a restaurant, having a sandwich and an oreo, sleeping through the night. And, Paige is thrilled to touch his cheek and tell him how soft his skin is.
Above all, she finally has peace of mind. “The last four and a half years have been one trial and error and disappointment and failure after another. It’s been day after day of just getting through the day and then getting through the night, accepting that our standards for how comfortable we can make him have to be set lower. Well, we don’t have to do that anymore. The bar has been raised.”
“We can’t cure him, and we didn’t give him a new body, but we made this one better, and that’s so much more than I thought was possible.”
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