SJS--A True Story of a Steve-Johnsons Syndrome

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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.


SYMPTOMS

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

NEW JERSEY

1 P.M.

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

9P.M.

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

9 A.M.

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?





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Comments 20 comments

A.A. Zavala profile image

A.A. Zavala 4 years ago from Texas

Such a terrible affliction! Hope your son is doing fine and avoids those antibiotics.


Lord De Cross profile image

Lord De Cross 4 years ago Author

Thanks AA ZAVALA,

His is doing fine so far, but he is very careful when He catches the flu or a fever. His life has changed forever and he has learned to deal with it. Thanks for you words my friend.

LORD


tammyswallow profile image

tammyswallow 4 years ago from North Carolina

I am glad this sad story had a happy ending. I have never heard of Stevens-Johnson Syndrome before. It looks like something that would be caused by high body acid like ulcers. I feel for your poor son. This looks very painful. Is he allergic to one antibiotic or just one type? This is a wonderful testament of a Father for his son. Touching and I hope this will help and inspire others suffering with this condition.


Gypsy Rose Lee profile image

Gypsy Rose Lee 4 years ago from Riga, Latvia

Wow i'm glad you pulled your son through this. Never knew such a thing existed. God bless him for having been such a brave and strong boy.


Lord De Cross profile image

Lord De Cross 4 years ago Author

Tammy, Hi!

Had a recurrence 3 months ago and doctors stopped it on time. He is allergic to Regular Antibiotics, so he gets special medication that I don't remember for now. Thanks for reading this hub with lots of bad memories.

LORD

Yes Gypsy Rose,

He did good on this one, but you never know when he will catch a different kind of cold.Thanks for your comments, it means a lot to me.

LORD

LORD


Eiddwen profile image

Eiddwen 4 years ago from Wales

My heart goes out to you and your son and what a tenderly written hub.

They say that painful thoughts make good reading and this is so true.

As well as maybe taking a little of the load from your shoulders it is very likely that this honest hub will also help others who are on the same road as you.

Here's lots of love and hugs for you and your wonderful son.

Take care my friend.

Eddy.


Lord De Cross profile image

Lord De Cross 4 years ago Author

Hi eiddwen,

You are right! The best hubs come from the heart and you know how it goes. I appreciate bunches your comments and glad you had a wonderful new year, back there in Wales!

LORD


wanderlust65 profile image

wanderlust65 4 years ago from Philippines

Your hub is so touching. Your presence during the time of your son's recuperation has greatly helped him feel better and made your boy's morale high. Great dad, you are!


Lord De Cross profile image

Lord De Cross 4 years ago Author

Hello there Wanderlus65,

Thanks for your comment. Remembering this episode of our lives is really...hard to take. But is there for who might need a little help in dealing with these critical moments in our lives.

LORD


Ardie profile image

Ardie 4 years ago from Neverland

Lord, thank you for sharing this horrible awful memory with us! I've never heard of this syndrome and Im so sorry that you have. I wish your son a life without further complications from contracting SJS.


Lord De Cross profile image

Lord De Cross 4 years ago Author

It did happen again , on last October, but this time mommy was ready to catch up the early symptoms... is something sickening and the boy..who is 18 now, really thinks twice before going out when it's too cold. Thanks for stopping by

LORD


Ardie profile image

Ardie 4 years ago from Neverland

The poor baby! Thank goodness for mama keeping an eye out for him. As he gets older he will be able to notice the symptoms sooner too.


Lord De Cross profile image

Lord De Cross 4 years ago Author

Yeah Ardie..it can be very frustrating, in dealing with this Syndrome..Thanks again

LORD


PDXKaraokeGuy profile image

PDXKaraokeGuy 4 years ago from Portland, Oregon

Joseph, I've never heard of this disease. I appreciate you enlightening us with it. I also thank you for sharing your very personal experience with it and I wish you and your family the best!


Lord De Cross profile image

Lord De Cross 4 years ago Author

Thanks PDX,

This is a true story and not fake at all. Actually he just turned 18 on december 31st. and Passed the test to join the Airforce. Older brother is a Senior Airman already. Thanks for your words my friend.

LORD


PDXKaraokeGuy profile image

PDXKaraokeGuy 4 years ago from Portland, Oregon

LORD, that's terrific. Glad he overcame his health challenges!


Lord De Cross profile image

Lord De Cross 4 years ago Author

You said it right Pdx! Health challenges can be seen on the positive side and its effects can change a life forever. Have a great week!

LORD


PDXKaraokeGuy profile image

PDXKaraokeGuy 4 years ago from Portland, Oregon

Thanks Lord. It's all about perspective!


Raevyn14 profile image

Raevyn14 4 years ago from Tecumseh, Oklahoma

My heart goes out to you, I also have SJS. I will always be scared of this illness now.


Lord De Cross profile image

Lord De Cross 4 years ago Author

Raevyn14, this syndrome can come back at any minute. My son has to be careful with sudden colds and sudden change of temperatures. He has to avoid certain types of antibiotics. Sad, but true!

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