The Agony of Stevens-Johnson Syndrome

Raleigh, NC16-month-old Lisa was rushed to hospital with an allergic reaction after taking children's Motrin. She was burning from the inside out. "Can you imagine the pain?" says her mother, "It's like someone taking a knife and cutting off your skin." She was diagnosed with Stevens-Johnson Syndrome (SJS).

"My daughter was first admitted to hospital for RSV virus," says Marla Taylor (not her real name pending a lawsuit). "About 10 days later she was discharged but got a terrible rash which spread all over her body. Little brown spots covered her skin from head to toe: she was in agony.

"We took her back to ER and right away they said it was SJS and the cause was from children's Motrin. When she got out of the hospital she had a high fever so we were told to give her Motrin, an over-the-counter fever reducer, like children's Tylenol. It contains ibuprofen.

Lisa's skin peeled from head to toe. At the hospital we had to douse her in Vaseline to keep her skin on. (The skin she has now is her second skin and not the skin she was born with.)

She couldn't be treated at the first hospital we took her to. Lisa was considered a burn victim - she had 3rd degree burns - and was transferred to the intensive care unit at UNC Chapel Hill, where she stayed for 35 days. At the same time, as if the burns weren't horrible enough, a lot of her organs failed and she developed a staph infection. Her lung collapsed, her liver failed and she had a seizure because of such a high internal temperature from the SJS burn.

Because of this seizure she had to learn to walk and talk all over again. Lisa had a MRI and there was no detectable brain damage but she constantly has internal seizures and, according to the neurologist, the seizures could continue throughout her life.

We believe it was the seizure (which is a form of epilepsy) from SJS that triggered more. And we are still not out of the woods. She had a seizure just a few months ago. When Lisa has a seizure, it looks like she is staring into space and she mumbles incomprehensive words and that sometimes lasts 15 minutes. The killer is afterward - Lisa has severe migraine and she has to sleep it off for a few hours.

Learning wise, she is a few years behind a normal child. Now Lisa is 12 years old and she has an after-school tutor; we have had to pay a lot of money to hire people to help due to her learning disability - she has a problem with comprehension and suffers short term memory loss. And when she gets older, Lisa will have a whole new set of problems to face.

For example, she won't be able to drive. SJS means long term side effects. Lisa knows that she was very sick and because of her learning disability, she doesn't have a lot of self-confidence so this affects her social life and she doesn't feel that she belongs at school. It was hard for her to make friends.

We were so happy that Lisa survived this ordeal and didn't even think about pursuing a lawsuit. But we started to hear a lot of stories about other SJS sufferers. In particular, one little child in California went blind; this really hit home and brought back a lot of memories, of how sick Lisa was. A few months later, my Dad gave me an article about a girl in New Jersey who died from SJS.

I am furious that the drug makers of Motrin didn't warn us that this could happen - they must know about incidents like this, they must know about SJS but still they don't take action. It is still sold over the counter - you can find children's Motrin at any supermarket or drug store.

We always look back and say that Lisa made it, and that is the important part. I just want to say to any parent who has gone through SJS to have hope, your child can make it. Lisa is a brave girl and worked hard to get where she is now.

I sure hope people read this before giving their child a drug like Motrin. If I could save one child, that is good enough for me.