"Stevens Johnson Syndrome Almost Killed My Daughter"

Wenatchee, WA"My 16-year-old daughter, Chelsea, was prescribed Lamictal to control her mood swings," says Shelly. "We were told she might get a slight rash but no one told us she would wind up in ICU with Stevens Johnson Syndrome (SJS ), which led to [Toxic Epidermal Necrolysis TEN." When Chelsea finally recovered, Shelly was told that TEN has a 70 percent mortality rate. "If I knew that sooner, I'd be in hospital too."

Shelly is also on Lamictal; she has been taking it for 5 years with no side effects. And in those 5 years she never read on the label anything about SJS; however the drug's label does list in its side effects a rash. It also says that "Lamotrigine (common name) should not be taken by people who are allergic to lamotrigine or any ingredients of the medication." But people like Chelsea find out they are allergic by taking the drug!

"By the time Chelsea was up to 100mg of Lamictal per day—about 4 weeks on the drug—she developed a slight rash on her chest," says Shelly. "Her pediatrician looked at it and advised Benadryl for the itching. The next day we were back to the doctor—it had spread all over her chest and her lips were swollen and blistered. But he just gave her more Benadryl. He also did some research while we were in the office and diagnosed Stevens Johnson Syndrome or SJS, and blamed the Lamicatal. 'SJS has a 40 percent mortality rate so if she stops breathing, take her to ER,' he said. And if we didn't make it to ER in time?

Sure enough, next morning Chelsea couldn't breathe through her mouth and just slightly through her nose. We rushed her to ER where she had a nebulizer treatment.

We were in this hospital for 6 days; the rash and blisters were over her entire body, inside in her mouth and down her throat. Every day the SJS was getting worse. She was given morphine and Atavan and Tylenol for a fever of 104.

And another girl at the hospital had SJS—it isn't that rare.

After 6 days an infectious disease doctor looked at her and demanded she get air-lifted to the burn unit at Harborview Medical Center in Seattle. We wanted to go there at first…If it wasn't for him, Chelsea would be dead. She had TEN—a much more severe reaction.

Within 15 minutes upon arrival, she was in surgery. They shaved her head and got all the blisters off; she had a pig skin graft from waist to face, the top of her head and part of her arms. When Chelsea came out of surgery they took her up to ICU. Luckily she didn't need to be intubated. She was in Harborview for just over 2 weeks.

She never complained, even though this happened 5 days into her summer holiday. Chelsea will have a great story to tell when she goes back to school. She got home July 7th and now the pig skin has sloughed off; she is healing. However, her skin will be discoloured—blotchy white and brown—for about a year; her fingernails are falling off, she has muscle and joint pain and insomnia. When Chelsea was prescribed a drug for insomnia I called Harborview: We are terrified of taking anything unless Harborview approves.

I want a formal apology from this drug company. And they must be held accountable, to educate both the public and the medical community. At first I was in shock when Chelsea's pediatrician told me she had SJS. Then I was furious; we were never told that SJS was a possible side effect. I want this drug company to get a black box warning; we shouldn't have to ask, we should be informed about any side effects."

Scroll down the Lamictal website, where it says the following:

LAMICTAL may cause a serious skin rash that may cause you to be hospitalized or to stop LAMICTAL; it may rarely cause death. There is no way to tell if a mild rash will develop into a more serious reaction. These serious skin reactions are more likely to happen when you begin taking LAMICTAL, within the first 2-8 weeks of treatment. But it can happen in people who have taken LAMICTAL for any period of time. Children between 2 to 16 years of age have a higher chance of getting this serious skin reaction while taking LAMICTAL.

Shelly wants to know why this warning never reached her family.