Have you ever heard of Stevens Johnson Syndrome?
I had not until about three years ago when I found myself inside the emergency room at Children’s Hospital in Birmingham.
Earlier that day my daughter Daisy began screaming uncontrollably, saying her nose and mouth were “on fire.”
I was at work when I received a call from my wife, Andrea, and I could hear poor Daisy screaming in the background.
Out of our four children, Daisy is the most laid back and the least likely to scream over anything, so I knew something had to be wrong. Two weeks earlier, I had received a similar call from Andrea that Daisy had cut her foot open and they were headed to the ER. I did not hear a peep from her, but this time, she was wailing.
Thinking we would be headed to Children’s Hospital, I rushed home while Andrea called our pediatrician. The nurse told her it probably was not anything but some soreness from a cold and said we should just watch her closely through the evening. I knew it had to be more than a cold, but Daisy had calmed down, so I returned to work.
About five hours later, I got another call from home. Daisy was now running a high fever and had a rash across her entire body. Andrea was on her way to the emergency room, and I left to meet her there.
When I arrived at the ER, Daisy was already in a triage room — she was fairly lifeless. Her pink rash was turning into a red rash, and her eyes were so red that they had passed the point of bloodshot. A few moments after entering the room, I asked Daisy if she wanted Daddy to lay beside her on the hospital bed. She said, “Yes,” so I laid down beside her and put my arm around her. I said a simple prayer in my head while we waited on the doctor to arrive.
Andrea and I had no idea what was going on with Daisy, but thankfully the doctor at Children’s had seen these symptoms before.
He explained to us that Daisy had Stevens-Johnson Syndrome, which is a rare, serious disorder in which the skin and mucous membranes react severely to a medication or infection. The disorder begins with flu-like symptoms, followed by a painful red or purplish rash that spreads and blisters, eventually causing the top layer of the skin to die and shed.
SJS is extremely rare. The doctor said that the hospital only sees two or three cases per year, and Daisy was the only child in the hospital at that time who was suffering from the illness. The doctor prepared us that Daisy could be hospitalized for anywhere from several days to several weeks.
After hearing the news, I sent out several texts to folks, and the response I got back was not very uplifting. Friends and family Googled SJS and found some pretty terrible stuff online.
It was determined Daisy came down with SJS after taking Bactrim, an antibiotic she was given two weeks earlier when she received stitches for the cut on her foot.
The doctor was optimistic that we had caught the disorder at an early stage, but he said the only thing they could do was give Daisy fluids to help keep her hydrated.
Daisy says she does not remember anything about that night in the ER. Her first memories are being moved via wheelchair to a room in the hospital.
Once in a room, I took to Facebook to let friends and family know what we were going through.
I was completely and totally overwhelmed by the response to Daisy’s situation.
People from all over were sending out their prayers, well wishes and positive vibes.
Daisy was only at Children’s Hospital for three days. Despite the fact that SJS can lead to terrible things, such as blindness or even death, her condition never reached an extremely serious level, and doctors and nurses were shocked that it did not progress further than it did. Everyone agreed that getting to the hospital as quickly as we did was a key to her fast recovery.
On the day we returned home from the hospital, Daisy asked how many people had been praying for her. I told her that I did not think there was any way to count. I told her that I thought the number was somewhere in the thousands. She responded with, “That’s a lot. I thought seven.”
Our family continues to be thankful for everyone who sent a kind word or passed along a prayer for Daisy over those few days. The situation could have been so much worse, and I honestly feel the love that was shown to us was a big reason for why Daisy made it home in a few days instead of a few weeks.
August is Stevens Johnson Syndrome Awareness Month. If you are on social media, go “like” the Stevens Johnson Syndrome Foundation page. There are many who are suffering from this terrible situation and this group does its best to spread awareness about the syndrome.
Most times SJS is misdiagnosed, so the more awareness about it, the better. Just letting people know about SJS could save a life.
