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Colby Chun is a brilliant, energetic and curious little guy, but his family spent the first year of his life worrying about his aching, oozing and sometimes bleeding skin.
An eczema was diagnosed in a 21-month-old boy while it was only a few months old. His doctor therefore prescribed a topical steroid ointment. When his skin cleared, his parents stopped applying the cream. Then his condition worsened.
"He screamed all night and he could not sleep," said Colby's father, Matt. "It was horrible."
They tried the cream again and it seemed to work, so they stopped it again.
"It's this rebound effect of stopping steroids," said Kristi, Colby's mother. "We used it for a few days and when we stopped using, when we thought it was effective, we would stop using it and then, it would bounce back and forth."
Matt and Kristi were perplexed and stressed. So were their doctors.
They sought answers. Despite the reluctance of doctors, they determined that the culprit was the steroids cream.
According to the National Eczema Association, topical steroids are often used to treat eczema, but when they are used excessively or incorrectly, the body can become addicted and respond severely. This condition is called topical withdrawal of steroids or TSW.
"This could certainly be a difficult case to diagnose simply because the symptoms look like many things we see," said Dr. Paul Eakin, a pediatric emergency physician at Kapiolani Medical Center.
Dr. Eakin said that patients who complain of burning, tingling or bright red skin after stopping steroid treatment often receive a diagnosis of HIV infection. skin or other conditions, and not TSW.
"It's quite rare to reach such a level, but I think patients or parents of children with eczema should be cautious in general," he said.
He recommends other treatments and creams for eczema and, as Chun did, using natural cleansing methods to cure TSW.
Thanks to their research, Kristi and Matt discovered that Colby's condition was not so mysterious. The couple has built relationships with others here in Hawaii and elsewhere in the country who are dealing with or dealing with TSW.
They hope to make their experience a lesson for others, especially young parents.
"Patients really need to trust their guts," Kristi said.
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