Girl persevered through rare, painful medical condition

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wwltv.com

Posted on November 15, 2011 at 11:40 PM

Updated Monday, May 21 at 9:45 PM

Meg Farris / Medical Reporter

NEW ORLEANS -- A local family is telling its tragic story in hopes of educating families and doctors about a rare reaction to some common medications.

But this story is also about hope, bravery and a parent's love.

It was the end of the school year in May, and high school girls, such as St. Mary's Academy junior Jasmin Bindom, were shopping for graduation party dresses.

But then Jasmin got a rash, and it changed her life forever.

"Just to see her from one extreme talking about a party and then the next couple of days fighting to survive without any warning, without an accident or something happen -- it was hard to digest," said Jasmin's mother Patricia Bindom, through tears.

At sweet 16, Jasmin's home for the summer was the burn unit at Baton Rouge General Hospital. She was transferred here from Our Lady of the Lake, also in Baton Rouge, when the skin on her entire body, from the top of her head to the tips of her toenails, looked like third-degree burns.

Her mother said her body was three times its normal size and she was breathing on a ventilator.

"Her face was like this (large), her body was like that (large), and she was just lying there she wasn't moving. She wasn't doing anything. The doctor would come out and say, 'Just pray, just pray,'" Patricia Bindom solemnly remembered.

"I did my utmost to keep her in a drug induced coma because everybody's hearts were open during this patient's care. And everybody's watching this beautiful young girl getting, just losing all this skin and devastation," said Dr. Dhaval Adhvaryu, an acute care and burn surgeon at Baton Rouge General Hospital and Baton Rouge General Physicians.

In September, Jasmin was back at her home in Belle Chasse. She had survived what many thought she would not. Her mother, who was battling a new case of breast cancer at the same time, postponed her reconstructive surgeries to care for her daughter physically and emotionally.

"Jasmin say when she was sedated she would have these weird dreams and she would yell for me and call for me and I wasn't there, and I couldn't hold her. I couldn't take her hand or anything," Patricia Bindom said of when her daughter first got out of the hospital. "So now when she sleep, I want her to sleep under me and I hold her to make sure that if she have these dreams, I'm there."

Jasmin screamed and cried when she found out her hair was gone. And with her skin scarred and her nails gone, she did not want to go out in public.

The cheerleader, who was always optimistic and loved praying for everyone else's happiness, now found it difficult letting anyone see her face.

"Well, I never ever thought that it would be something like this. I just thought it was chicken pox or something, I guess, or an allergic reaction," said Jasmin.

What happened to Jasmin is called toxic epidermal necrolysis, or TEN for short. It's the most aggressive form of Stevens-Johnson syndrome. Your own body literally attacks and kills the outer layer of skin.

"This is the worst case of Stevens-Johnson I have seen on a child. 16-year-old young girl, beautiful, young girl with almost 100 percent loss of skin and no etiology," said Dr. Adhvaryu.

"It's considered a hypersensitive immune system reaction against one's self. I've seen multiple cases as a reaction to a lot of antibiotics and to some cases, what we call idiopathic, meaning we don't know the reason why. A good 40 to 50 percent of the cases we don't end up having the underlying cause," said Dr. Theron McCormick, a pediatric allergist and immunologist who treated Jasmin. He is the pediatric medical director of Our Lady of the Lake physician group.

Jasmin had not taken antibiotics. She told her mother she was not feeling well and took Extra Strength Tylenol. At the hospital, she was given Motrin. Was one of those the cause of TEN, reacting with her genetics, or was a virus the cause of the TEN and the reason she felt she needed to take the headache medication in the first place?

Doctors do not know.

As her senior year started, Jasmin did her school work at home. Her faithful little sister Daphne never left her side. Her friends made sure they visited and put on fundraisers and sold special commemorative bracelets.

"I always tell her that she's beautiful and that she's gonna eventually, it's gonna be back to normal and everything," said classmate Amber Stokes.

The nuns drive down to Plaquemines Parish to her home on their days off, to teach Jasmin and to keep her from falling behind in her senior year.

"It's a blessing for me to be part of Jasmin's healing," said one St. Mary's teacher.

Jasmin wears a special body suit to help with scarring. Her family got her wigs and hats and special makeup, and slowly the beautiful, always optimistic personality began to come back.

In October, Jasmin went back to school for a day to get her senior jacket and to perform in the school choir.

"I just want to praise you forever and ever and ever, for all you're done for me," sings Jasmin about her faith.

She also got on stage after mass to say thank you.

"Even though this wasn't one of my best summers, I had all y'all support and the support of my friends," she said on the microphone accepting a bouquet of flowers from the school.

And while that was an incredibly exciting day for Jasmin with all of her friends, getting her senior jacket, her journey was far from over. She still needed special eye surgery because her eyelids were stuck to her eye balls. So she was going to be out of school for another few weeks.

And her dermatologist in Baton Rouge is doing everything she can, from different lasers and steroids to stop the scarring, to work around the fact that Jasmin's skin keloids -- meaning her skin is making too much scar tissue -- and to fix the contracture that is making the skin, on places such as her neck, tight and inflexible, keeping her from moving normally.

"She's a young, beautiful girl, just beautiful, and I want to bring her smile back. It's going to be a long process. It's not going to take months, it's going to take years. Little by little though we see the improvement with each visit. We need that girl when she looks in the mirror to like what she sees," said Dr. Ann Zedlitz, a board certified dermatologist and LSU Health Sciences Center assistant clinical professor.

Most of her hair and some of her pigment is coming back. The itching and active scarring is controlled. But there's another hurdle. Her health insurance company, so far, is denying the skin treatments.

"I'm not waiting to treat her. This is not a cosmetic issue. This is a functional issue with the contractures and the active scarring. And for her to be able to physically become a normal person that can achieve normal jobs and education, she's got to have these scars addressed," insisted Dr. Zedlitz.

"Jasmin say, 'Mom, God chose me because I'm strong.' She say, 'Thank you God from picking me because I'm strong,'" said her mother.

"It took a long time but I just had to realize that everything happens for a reason, and that there was reason why I got this," said Jasmin.

At her visit back to school Jasmin locked arms with her friends and loudly cheered and sang her alma mater. "St. Mary's our academy, we love thee well."

Little by little the dermatologist is seeing improvement in Jasmin's skin. She is donating treatments and continues to show the insurance company why treatments are medically necessary.

Jasmin's medical costs and medications are running around $700 a month. You can donate to her health-care fund called "Team Jasmin SJS" at any Regions Bank.

For more on SJS, click here.

For a list of antibiotics and other medications that are associated with Stevens-Johnson Syndrome and TEN, click here.  

Click here for a link to the original story

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