Stevens Johnson Syndrome: "A Horrific Experience"

September 29, 2010, 10:30AM. By Heidi Turner

Los Angeles, CALike so many other people, Sandra (real name withheld) did not know about the risk of Stevens Johnson Syndrome (SJS) before her 13-year-old daughter developed the condition. After her ordeal, however, she wants everyone to understand how terrible SJS can be.

"My daughter had completed a course of Bactrim," Sandra says. "A few days after she completed it she started getting headaches and a rash. Her eyes were very red and itchy. I took her to urgent care and they said it was an allergic reaction. They gave her eye drops and recommended calamine lotion for the rash, so we did that.

"That evening her body started blistering. She was really hot and had a fever and was blistering everywhere. It was scary. I took her to the ER, and that's where they diagnosed her with Stevens Johnson Syndrome. Her blood pressure dropped so low that an ambulance took her to another hospital where there was a pediatric unit with an isolation room. She was given an IV right away and they started giving her steroids to stop the inflammation. Meanwhile, her body was proceeding with the disease—she had rashes over her body and her lips and her eyes.

"Every opening in her body was covered with this rash. It was very painful; she could barely talk, couldn't part her lips, and could barely open her eyelids. An eye doctor recommended steroid drops plus a course of eye drops every hour to keep her eyes moist, and she was given something for her lips so she could part them.

"They were washing her with a solution in her mouth to stop the blistering from hurting so much inside. She couldn't eat. Her body was blistering and they gave an IV of some kind of immunity booster over three days or so. That seemed to help a lot. But the condition kept running its course. The blisters eventually started to ooze out and the burn unit came up and bandaged her with special bandages. She was in pain for most of the time she was in the hospital.

"After treatment with immunity booster, she took a turn for better. Once she could keep food down, they discharged her. We've been going to outpatient care, dermatology doctors, regular doctors and an eye doctor. She's been prescribed steroid ointments for the blistering and the skin. It's looking a bit better right now. She still has the eye drops and ointment for her lips. They're saying it looks like she's recovered well but they're not sure about the long-term effects. We still have several appointments and have to keep administering drops.

"It was a pretty horrific experience. When it happened, I thought it was flesh-eating disease. We got through it. She's alive. But it was a scary, stressful experience.

"She seems to be a lot better, as far as pain goes. She still has a lot of skin irritation and her eyes are still bothering her. She's gargling solution, and has complained about some pain in her throat. Other than that I think she's recovered pretty well. Her skin is peeling in pieces. Big patches of skin are coming off, so she can't return to school yet.

"I think that people should be very careful about what kind of medications they give to their children. They should read labels and take the warnings seriously. Before this situation I had no idea this could happen. It needs to be in bold print—people need to be aware that they're taking a chance with their child's life by administering some of these drugs. You don't know unless you've been in that predicament, but it's scary."