My son was 2.5 years old when he was admitted to the Children’s Hospital on Nov 7th, 2009, in Winnipeg, MB Canada. I also had never heard of SJS. Today, it is all I think about.

The mother of young Liam refers to herself simply as Melanie. But she so identified with Avi Selk’s recent Dallas Morning News story about a rare skin condition known as Stevens Johnson Syndrome, or SJS, that she felt compelled to comment on the story.

My son was very ill. He was the first child they had ever had in that hospital that had needed to be incubated to save his airway, to keep him breathing,.. the first child that hospital had ever had in PICU (pediatric intensive care unit) fighting for his life.

SJS is a life-threatening condition that begins with a rash on the skin. The rash blisters over and the skin begins to peel off in sheets, exposing the body to infections. Blisters can form on the eyes and internal organs, leading to complications with the eyes, bowels and digestive system. In severe cases, the condition can be fatal.

While the cause of SJS is still baffling, most believe that it is caused by an allergic reaction to medication. As many as 2,000 drugs have been linked to SJS, most often antibiotics, anti-inflammatory drugs, and anti-seizure medications. The only drug found in Liam’s system at the time of his diagnosis was Children’s Motrin, a common over-the-counter medication that Liam had taken numerous times before.

My son was the picture of health. SJS stormed in our lives, it is forever in my mind and I am forever haunted, waiting for its return. Without knowing the ACTUAL trigger,.. I live in constant fear.

People need to know about SJS, doctors needs to know about SJS… ignorance is not bliss.

SOURCE: Stevens Johnson Syndrome › Mother says SJS awareness is a must: ‘Ignorance is not bliss’

TOUCH IS THE SENSE OF LOVE
I’m scared,
 You hold me.
I cry,
 You hold me close.
I’m hurt,
 You hold me closer.
Touch is the sense of love.

It’s hard to imagine such a beautiful and beaming girl healthy one minute and hanging in the balance of life the next. Her struggle is laid out in a Web site her parents set up to follow her progress as she recovered from the severe reaction to medication. Photographs and poems written by Kaitlyn offer an insight into the battles she fought and the appreciation she had for those who stood by her:

FAITHFUL FATHER
Faithful father,
Tall, brave and strong.
Faithful father
To him I belong.
It was then he cried,
when I almost died.
Faithful father
My life I depend on you.

Kaitlyn’s family’s nightmare began April 5, 2002, when Kaitlyn began showing signs of the flu. She was treated at an urgent care center the next morning and by Sunday she had a severe rash and high fever. She was admitted to the hospital and her parents watched as their daughter’s health deteriorated.

The diagnosis – toxic epidermal necrolysis (TEN), a severe form of SJS, a rare but life threatening hypersensitivity disorder affecting skin and mucous membranes. The disorder affects all ages and genders, including the pediatric population. It is most often caused by a reaction to medications such as non-steroidal anti-inflammatory agents like ibuprofen and some antibiotics. Kaitlyn’s condition was caused by a common over-the-counter medication, Children’s Motrin.

Kaitlyn passed away on December 17, 2003, due to complications from SJS/TEN, but the Web site has helped those of us who have never met her understand just how extraordinary she was. With hope, maybe her story will prevent another precious child from suffering.

SOURCE: Stevens Johnson Syndrome › Young girl’s struggle with SJS laid out on Web site

The Johnson family claimed that Children’s Motrin caused their daughter’s skin to break out in excruciatingly painful rashes and blisters after giving her three doses of the over-the-counter medication. Her eyes blistered over and she was blinded. Sabrina, who was 6 at the time, was diagnosed with Stevens Johnson Syndrome (SJS), which is an extreme adverse reaction to some drugs, including ibuprofen. The active ingredient in Children’s Motrin is ibuprofen.

The family claims that the drug maker did not provide adequate warning of the possible reaction on its medication label. A jury found that the medication’s labeling, which advises consumers to notify a doctor if the child’s symptoms change, was adequate.

“The FDA is not doing anything for us. They are taking care of the prescription drug people. They’re taking care of their billions of dollars. And the few children that die … Oh well,” Joan said in the news report.

The Johnson family is appealing the case. At least nine other lawsuits have been filed by others who have suffered from SJS after taking the medication.

SOURCE: Stevens Johnson Syndrome › Family appeals case against makers of Children’s Motrin