Our first child, Michael, was only eight months old in 1953 when we noticed a strange rash on his arm. When it seemed worse the next day we took him to the family doctor. After a brief check-up, the doctor suggested that we take him in to Children’s Hospital in Milwaukee to see a pediatrician. He commented that Mike’s condition was something he had never seen.

After a brief examination, the pediatrician excused himself and was gone for about fifteen minutes. He returned, apologizing, saying that he had consulted his text books. He said Mike had Stevens-Johnson’s disease…a rare skin condition. He had never seen symptoms so early in their development because usually at this stage the family doctor was still treating it as ‘just a rash’.

The pediatrician wanted him to be hospitalized immediately, saying that Mike would be much worse before he got better. These fifty-three years later, I can still recall my feelings as a nurse came, took my baby and carried him down the hall screaming and stretching his arms out to me over her shoulder.

Back in those days parents were not allowed to stay with their small children who were hospitalized. In fact, we were advised not even to come to see him for three or four days. We were horrified!

We were allowed to go to his room to see him before we left the hospital, but that was even more shocking. He had been placed in a tiny isolation room and his entire body had been covered with gauze saturated with solutions to help pain control and promote healing. Tiny slits were left for his eyes, nose, and mouth. He just lay there, not crying, not recognizing us.

The doctor had talked to us about a new experimental drug now on the market that might cut Mike’s healing time in about half. We signed a release form allowing cortisone, the new drug, to be given to him. It did help.

We visited him each day, just to look through the glass and watch him as he lay wrapped up like a mummy. The nurses assured us that he was ‘doing well.’ We did not see his skin at its blistered stage.

On the fifth day when I arrived, he had been moved to a general ward and the bandages had been removed. What a wonderful experience that was for me. At one end of the ward was a circle of rocking chairs. Each was occupied by a volunteer rocking a baby. One of those babies was Mike, who got all excited when he saw me walk toward him.

The next day we took him home. But the trauma was not quite over.

Shortly after being put to bed that first night we heard awful sounds of him gagging and throwing up. The contents were huge clumps of what we later found out were the mucous membrane lining of his stomach. The hospital staff had neglected to tell us ahead of time that this was to be expected. Fortunately, we had a phone number to call at the nurse’s station, and she reassured us that he would be ok.

Within just a few days he was his old self, eating well, laughing, and not showing any signs of the ordeal he had endured.

Interestingly, Mike has been the healthiest of our three children. He almost never gets colds or flu despite the fact that he works as a school psychologist and is in daily contact with many children. I have sometimes wondered if the SJS had given him special immunity.

At the time of his hospitalization, I do not recall ever being asked if Mike had been on any medication. I do know that he had no infection at the time he got the rash. However, I also do recall that almost all doctors in our area prescribed a purple, grape flavored sulfa pill when any child had an earache or sore throat. Mike had taken them for earaches, but I do not know how long before he developed the SJS.

After forty-two years of typical family living we had our second experience with SJS.

My father had been an exceptionally healthy man except for allergies. He knew he was allergic to penicillin and sulfa. He had gotten a severe hive reaction to those two drugs.

In 1985, when he was ninety-nine years old he moved into a nursing home. His allergies were recorded on his chart.

One Sunday his nurse noticed a bit of drainage from one ear and Dad complained of pain. The nurse called the doctor on call, and he prescribed amoxycillin. The nurse said he was allergic to penicillin, but the doctor assured her it would be ok, and to give him some benedryl if he got a rash.

In the morning the staff called his family doctor who stopped the drug. By afternoon of that day his body was red and blistering. The staff tried everything within their means to give him relief, to no avail.

The next day he was transferred to the Burn Center of the University of Wisconsin Hospital. He was immediately diagnosed with SJS.

Just as happened to his grandson, he was wrapped in gauze and medicated.

On the third day we were told he would not survive, that his kidneys were shutting down. They estimated that he could ‘linger’ for five or six days.

The next day, however, his previously strong heart gave out, and he died peacefully surrounded by family. We think God interceded to stop his suffering.

So, what are the lessons to be learned? Mostly, we just have questions.

Is SJS passed on genetically? Should our children, grandchildren and future great-grandchildren be warned about sulfa and penicillin? Should we be warned about drugs like Bextra that contain sulfa? Is SJS most common to infants and the elderly (as we were told) or are those of us in between those ages at risk also? Why aren’t doctors better informed about SJS?

Joyce M Breen