Four-Year-Old Iowa Tot Survives Stevens Johnson Syndrome

October 3, 2013, 8:00AM. By Gordon Gibb

Waterloo, IANo child should have to go through what Emma Miller went through. Not even kindergarten age, the Iowa girl was stricken with Stevens Johnson Syndrome last year. She’s recovered now and a vibrant participant in her school’s kindergarten class, but in 2012, it was a different story.

According to the Daily Iowan (9/27/13), it all began as many SJS cases do with a fever. Her parents administered ibuprofen to the then four-year-old in an effort to break the fever - fairly standard practice for parents.

“We were giving her ibuprofen for the fever to go down, that was a Friday,” Jodi Miller, Emma’s mother, said. “But Saturday morning, there were red rashes covering her face and then went all over her back.”

SJS often begins with such a Stevens Johnson Syndrome rash, and it often follows the dispensation of ordinary, over-the-counter medication such as ibuprofen. Doctors and scientists remain baffled as to why this is, save for the potential for an allergic reaction that may affect one person, but not another.

That said, what has Stevens Johnson Syndrome lawyers up in arms is the allegation that some medications omit or play down the possibility of Stevens Johnson Syndrome. Parents aware of the potential for Stevens Johnson skin disease might well prefer to try other treatment options in order to avoid a potentially life-threatening situation.

In Miller’s case, the tiny four-year-old lost 85 percent of her skin. Initially treated at Covenant Medical Center in Waterloo, the child was later transferred to University of Iowa’s Children’s Hospital and treated in the Pediatric Intensive Care Unit.

Most serious Stevens Johnson Syndrome patients are treated in burn units, given the severity of their condition and the similarity of Stevens Johnson Syndrome symptoms with serious second- and third-degree burns.

As young Emma Miller struggled in the ICU on a ventilator for several days, the SJS took its toll before finally beginning to abate on the 11th day. Her parents report lingering problems with her eyes and ears, but view them as minor. In that sense, little Emma appears to have gotten off lucky. Many survivors of Stevens Johnson Syndrome are left with serious and permanent eye damage, frequently involving extreme light sensitivity. She also appears to have escaped some of the severe scarring that many Stevens Johnson Syndrome rash victims are left with.

“When [Emma] got all better before she left the hospital, she looked perfect,” said Gwen Erkonen, UI clinical assistant professor of pediatrics, who treated the Miller child. “She just looked beautiful when she left; you would never know what she’s been through.”

Emma’s father Andrew told The Daily Iowan that they’re hoping Emma’s ordeal and the telling of her story will raise awareness of the potential for Stevens Johnson Syndrome. “Not a lot of people know about [the Stevens Johnson Syndrome],” he said. “There’s not really a mandatory reporting system about it. Any awareness that can be raised through [Emma] is great.”

It is not known if the Miller family is contemplating a Stevens Johnson Syndrome lawsuit against the manufacturer of the ibuprofen that appeared to trigger SJS in the child.