"SJS Made Me Feel Like a Bubble Boy"

July 23, 2010, 10:30AM. By Jane Mundy

Clarkesville, TNDaniel, 22, was only six months old when he was given Dilantin, an anti-epileptic medication used to control seizures. Luckily he was too young to remember the agony of Stevens Johnson Syndrome (SJS), but Daniel's mother told him that he flatlined—twice.

"To this day my mom doesn't know why I was prescribed Dilantin, because I never did have seizures," says Daniel. "But like most people, she trusted the doctor. From what my mom told me of my time in hospital, I think seizures might have been preferable to getting SJS—I was covered in massive rashes and giant blisters all over my body."

Daniel's uncle was a medic in the military, and that may have saved Daniel's life. "He took one look at me and rushed me to the hospital, but the SJS was so far gone I was flown to a burn unit at another hospital," Daniel says. In order to stop the progression of SJS you have to be taken off all medications so he was taken off Dilantin.

"My mom said that all they could do was monitor me; there was nothing else they could do. I don't think the SJS progressed to SJS/TEN because I am still alive.

"Soon after I was taken off the Dilantin my lungs began to collapse, so they gave me steroids, but I was also allergic to the steroids. Of course the doctors didn't know I was allergic, and being so young, I wasn't tested. Besides, there wasn't any time to test me. They put me on a breathing machine and strapped an electronic device to my wrist that monitored the beat of the main artery in my wrist. (I still have a scar on my wrist from the monitor.)

"I was in hospital for a few months so I guess the SJS was pretty bad. My family must have been freaking out. I was on a defibrillator when I got home and everyone in my family took turns taking watch (I have four siblings). I was about 18 months old when they could finally breathe a sigh of relief.

"I never did find out why I was prescribed Dilantin and maybe I will never know because I don't want to talk to that doctor. And I'm not sure why things happened the way they did—with me almost dying. Thankfully I didn't suffer eye damage or brain damage like other SJS victims; it just damaged my skin. I know I can't ever take any sulfa drugs or Ibuprofen or steroids. Even when I get hurt I cannot take a medication.

"Interestingly, my body has a high tolerance to pain. I think that has to do with SJS; it damaged a lot of nerve receptors in my body. If I cut or bruise I am not usually aware of it. That can be a good and bad thing.

"I am constantly fearful of getting SJS again—I've had two small outbreaks since. I feel a bit like a bubble boy because my body can overreact to anything I am allergic to. Luckily I'm not allergic to any food—just some nasty pharmaceuticals."