- Kids Health
SJS--A True Story of a Steve-Johnsons Syndrome
WHAT IS SJS?
Stevens-Johnson Syndrome (SJS) was diagnosed as a disorder in 1922 by Albert Mason Stevens and Frank Chambliss Johnson, American pediatricians; due to their findings they published a description of this Syndrome at the American journal of diseases of Children.
WHAT IS IT AND HOW THIS SYNDROME IS NOT WELL KNOWN?
roughly is a mild classification of Toxic epidermal necrolysis(TEN). In simple words, this is a disorder due to the severely reaction of the mucous membranes and skin toward medication or infection. This is completely dangerous and can cause death of the epidermis that is forced to separate from the dermis. Mostly is triggered by a reaction to antibiotics and sulfa drugs, a little percentage is caused by genetics. Is barely known due to the low percentage of incidence, around 2.6 to 6.1 cases per million people per year.
For this unlucky percentage, it starts with a severe cold and a skin rash. First mistake from Doctors is prescribe antibiotics and overlook the initial damage: Skin reaction and destruction of skin tissue, sort of a purplish rash with top layer of skin dying and shedding. Think of just pouring cooking oil on the face of this patient and get a lighter near the skin. In less than 48 hours the tongue will get swollen to the point of stopping the patient having a normal meal. Pain and blistering will accompany Conjunctivitis. If not treated on time patients will become blind. Around 5% of treated patients won't be able to see, due to cornea detachment and irreversible damage.
ON WHY I KNOW ABOUT THIS SYNDROME? MY SON HAD IT
FEBRUARY 15, 2009
Ex wife calls my house to give me the news. My child was 350 miles away at Pittsburgh Children's Hospital. My ex wife and I separated in 2004, and she moved back home, meaning Pennsylvania. I call off from work and decided to travel those 6 hours. I didn't know what was going on. All my ex was saying on the phone was that My son had an allergic reaction to antibiotics and he was at the ER.
PITTSBURGH CHILDREN'S HOSPITAL
Security is alerted on the entrance and they give me a pass. On the elevator I kind of go back when he was a premature baby who just made it and now was in danger again. The elevator stops on the 8th floor. Resident doctors take me to room 810.
THE MOMENT YOU WILL NEVER FORGET
I see a nurse coming out and asking me if I was Mr. Cross: "Sure is me, this is room 810 as they told me," I say nervous enough. "Come in Mr Cross, your Wife is there too."
The first thing I see is my ex, crying and coming toward me. But oh my God. My 14 years old looks like a monster and as soon as he recognize me, he starts to cry, and of course me too. I get close to him... and hold his hand. His tongue was almost sealed to his lips and pus and blood were mingling with his tears...and like the biggest punishment for a father...he try to pronounce this words almost unintelligible: Why me, why me...!!
In total pain he hits the side of the bed and the nurse cleans, or try to clean the pus and the red saliva His eyes are so read and sore. Seemed like they ganged up on hin and was left to die.
My ex is holding my little one and in tears asks me to stay with him. And like a father I say, trying to keep the scene under control, "sure, he is our son." Crying myself I get closer to him and apologize for having been so far away and not even aware of this disease. He looks to the ceiling and tries to catch his own breath. My ex leaves and I stayed... not for a day or 2... I stayed until he got saved...
FATHER AND SON TOGETHER FOR 11 DAYS
I want to recount the moments we spent together and try to trust my memory. I slept on a sofa recliner, in a corner of the room, facing him. That night was one of the longest, due to his coughing and spasms. On the next morning we got a visit from the Pediatrician in charge, she would ask the nurse about prognosis and how was he improving. Later on, a round table with Medical students that were around to study his case gave me an insight of this disease. They even asked me questions of how he was doing during the night. I told them that he was having a severe3 pain around his mouth and at times would cry of impotence.
I learned to check his vitals and call the late shift nurse to come to check on him. On the third day, he was able to swallow Jello and some chicken broth. There were moments that I would ask the nurse to watch him until I get a sandwich from the first floor cafeteria. Don't get me wrong, I was scared but I guess the guts from a dad were there. On the 6 th day he was able to play games and get online on a lap top supplied by the staff.
On the nine day we were talking and the Physician in charge told me that he would have to get a follow up check on his eyes and for life woul have to avoid sulfa antibiotics. We had a long talk..and I remember telling him to take the pain as a boot camp payne drill . I would scream next to him and...at times we would smile, but eventually would cry together.
FEBRUARY 25, 2009
CHILDREN'S HOSPITAL FRONT LOBBY
Is the last day of my 'visit' and my son is almost cured. Ex wife takes over and drives him home. I gave him a hug and headed back to Jersey and reported to work. During the next months read about this syndrome and knew.. or found out that by himself, he would've die or become blind. Lord, you get your pick, would you?