SJS Will Never Go Away

Sarasota, FLLast November, 2006 I interviewed Tara Runge, whose daughter Madison almost died from Stevens Johnson syndrome (SJS). Madison is now 13, but still suffers terribly from SJS.

The first time Maddy developed SJS was in March 2006 from a ten-day course of penicillin and spent one month in the burn unit. "Since we last talked, she has a lot of gastro-intestinal problems and she wore a burn suit for a year after being discharged," says Tara. "She stopped wearing it right before school was out this May."

"We weren't supposed to go back to the burn center in Tampa until September of this year but they called and I had to take her in three weeks ago," says Tara. "There was an issue with the Acticote—pure silver sheeting with antibiotics that she was wrapped in. The doctor had recently gone to a conference and they discussed whether or not patients are getting silver poisoning. They used a lot of Acticote on Madison and other physicians at the conference advised him to get her back in asap.

"They didn't tell me why she had to come back so soon until we got to the hospital. The doctors looked for any shimmery parts on her skin but she has a lot of scarring on so many parts of her body that she already looks iridescent. The only way they can tell silver poisoning is by a skin biopsy. We opted out of that for now—that's all she needs. Madison doesn't need to go through any more pain. I feel that every time we deal with one issue and it's under control, something else gets thrown at us--there is always something new to deal with.

She now has an infectious diseases doctor. What if it is mandatory that she has to be put on some kind of antibiotic? What if she is allergic to everything? Since she came out of the hospital, Madison has only had Tylenol and the smallest of doses. I'm not too worried about Tylenol because all the doctors have told me she won't get SJS again from this medication. But who knows? They didn't know about children's Motrin (many kids developed SJS from this med) or penicillin-- as in Madison's case.

She also sees a neurologist now. Maddy has horrible migraines and he wants to put her on meds for these headaches. But I looked up the drug he was going to prescribe and saw the side effects—one of them is SJS. He knew that but the chances are slim. However, the chances were slim to none that she would contract SJS from penicillin. Who wants to take that risk again?

And there is more. Tear ducts can completely scar over and that happened with Madison. We have already gone through two eye surgeries that didn't work and now she is scheduled for a third. But we talked to the neural ophthalmologist and he said that performing this surgery and irritating the mucus membrane again can stimulate the SJS to re-occur.

Of course Madison is really nervous about having surgery. I don't think stress triggers it—just medications. And if you've already had it, mucus membranes can be the trigger. Apparently SJS lies dormant and I don't think it ever goes away. At least that is how the experts explained it to me.

It is so frustrating for me. There was no warning label on the medication bottle or any hand-outs. Did you know that any mention of SJS didn't have to be in the label or hand-out? As long as the pharmaceutical company informs the prescribing physician, that is due notification.

Why doesn't that physician have to tell me of the side effect? Once Madison was in the hospital, we live in such as small community that her doctor found out immediately. She had the nerve to phone us in ICU and see how she was doing. He phoned on the fourth day when we didn't know if she was going to live through the weekend. I was short with her on the phone. 'Well I guess you have your answer, it wasn't sun poisoning,' I said. 'SJS is so rare that we would have never thought that was what she had,' my doctor replied. That reply wasn't good enough for me.

I am not pursuing this lawsuit to make money. I am doing this because my daughter suffered a life-threatening illness. Shouldn't somebody be accountable that my daughter will never be the same? She can never go to gym class, she will never be able to live a normal life."