Stevens-Johnson syndrome

BoopRN · Oct 22, 2008

My father had this 2 years ago. He ended up being in a burn ICU over Thanksgiving and Christmas. He had a spinal fusion at a small orthopedic hospital on a Thursday. On Saturday he started developing blisters over his body. Monday he was moved to the hospital across the street in the morning then to the burn icu about 15 miles away in the evening. They were not able to pinpoint what caused his. He had a angiogram a couple of weeks prior to the surgery and he had antibiotics and pain meds and of course anesthesia for the surgery. He was also treated with IGG initially which caused his spinal fusion not to fuse. It was such a horrible time, I remember hearing him scream during dressing changes. He truly looked like he had been in a fire. There were several times that they told us to be prepared for him to pass...but he has no lasting effects now other than some very slight skin scarring, needs glasses, and a need to have the back surgery repeated. He is now so weary about taking medications. They said that it could have been caused by antibiotics or even something as simple as ibuprofen!

Melissa7611 · Oct 22, 2008

My grandfather had it. Took them 1 1/2 years to diagnose it. And no one here in the states could figure out what he had. They thought scabies, mental illness, allergic to a medication...that they could never figure out. It took my Mom and grandmother to take him to South America to see a specialist to figure it out. He figured it out within one visit. Go figure! He was 86 when he first started having this allergic rx. He was in and out of hospitals. Went through sepsis two times. Taken on and off meds, except for the one class of med we insisted he be off of...anticonvulsants.

He was being poisoned from the depakote, dilantin and every other epileptic drug on the market. Turns out, as soon as the dr. took him off of it, his skin improved (it was literally peeling, with boils, sores, scabes) and his mental status returned to semi-normal state. After suffering for so long with Steven Johnson he has never returned 100 percent to his previous mental status.While sick, he had hallucinations, it was scary. But he's still here. 2 years later. Once you have that illness, you are never the same. You are now more sensitive to specific meds.

rholman · Oct 22, 2008

My best friends son got in when he was about 8 years old, nearly died. He is grown now but has continuing health issues, mainly his eyesight. The corneas of his eyes were severly damaged leaving him legally blind.

KeechieSan · Oct 22, 2008

I saw a case on my first day of nursing school, I'll never forget it. The man had it before, and was treated successfully, but very painfully. It happened again and he decided NO treatment. He wasted away in this ICU room for three weeks, it was terrible. Tube feed, PICC, foley, ... the works. I was there the day he died, it was so sad. He refused to let his family in so he died basically alone, except for the nurse pushing morphine. He looked terrible, like he had 3rd degree burns over his entire body. Because he hadn't had treatment the other nurse said it was the worst case ever reported. I helped with post-mortem care and I almost puked. I figured that since my first death was a Stevens-Johnson patient that I could pretty much handle any death, its really difficult to get any worse than that.

Keysnurse2008 · Oct 23, 2008

Stevens- jonson.....very bad stuff! I have had a few...very few with this rare condition...usually after dose #2 of ATB......red erythemic lesions thaqt rupture open and the pt usually ends up in a burn unit...or at least in our ICU we placed them on sterile sheets like a burn pt. Horrible condition!!!!!pretty grim stuff:(

ParrotHeadRN · Oct 23, 2008

I took care (briefly) of a pt several years ago that had it after several doses of an ATB I can't recall. It was AWFUL. We shipped her to a burn unit VERY quickly. Her skin was just SLOUGHING off, we couldn't keep lines in her because they just slid off. She was screaming and we couldn't give her enough morphine to even touch her. The doctors taking care of her had NO idea what to do with her. At one point one of my coworkers said "her hand is degloving" and the doc just said "we expect that" and walked out. Meanwhile 3 of us were in the room trying to put silvadene dressings all over her body. It seemed all we were doing was hurting her more. By the time she left, she was screaming "just let me die!" All 3 of us (the nurses) were in tears by the time she left. The docs, of course, were long gone. It was some time ago and it's STILL fresh in my mind. HORRIFIC.

marilynmom, LPN, NP · Oct 23, 2008

I saw a case of it last year.

The patient (a child) had black blistery looking things all over her body and inside her mouth. After the blisters dried up she was peeling big patches of black skin all over. It was pretty bad, I've never forgotten what it looked like.