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Home arrow News arrow Local News arrow Teenager has rare disease

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Teenager has rare disease


By Lisa Britton

For the Baker City Herald

The story Shelly Conro tells sounds like a horror movie, the main character suffering from a rare disease  that causes his skin to blister and shed.

Except this isn’t a movie she can turn off.

This is the story of her son, Colton Ficek, 14, who has been diagnosed with Toxic Epidermal Necrolysis, the most severe form of Stevens-Johnson Syndrome.

These conditions are caused either by bacteria or a reaction to drugs such as NSAIDS (non-steroid anti-inflammatory drugs), penicillins and anticonvulsants.

According to the Mayo Clinic website, Stevens-Johnson syndrome begins with flu-like symptoms, followed by a painful red or purplish rash that spreads and blisters, eventually causing the top layer of your skin to die and shed.

The incidence rate is 0.05 to 2 persons per million per year, and drugs are the cause in 95 percent of cases, according to the US National Library of Medicine and National Institutes of Health.

For Colton, the symptoms came on suddenly.

On June 30 he was with family at Pilcher Creek Reservoir near North Powder.

By July 3 he had a rash and fever of 104.7 degrees.

“And his face swelled up — he looked like Charlie Brown,” Conro says.

Next came several trips to the emergency room, culminating with a stay the morning of July 4.

“His lungs sounded awful,” Conro says.

She said his heart rate was in the 150s, and his blood pressure was low, between 80/40 and 70/30. A “normal” blood pressure is 120/80.

His rash was itchy.

“His feet would itch and his hands would itch,” she says.

That afternoon he was flown to St. Luke’s Medical Center in Boise.

“He was joking and his rash was down,” she says. “Then they gave him a shot of Benadryl and it flared again. He’d stand up and his heart rate shot up to the 180s.”

For his fever, the medical staff alternated ibuprofen and Tylenol.

Then Colton’s skin started to blister.

“He scratched and some skin came off,” Conro said.

Next came raspy breathing, coughing — and then his lung collapsed.

He was in the ICU for three days while doctors tried to determine the cause.

“He was poked, prodded, scraped and biopsied,” his mom said.

She is a medical assistant for Dr. Barbara Tylka, and Tylka spent a day in Boise with Conro and Colton.

“She was my eyes and ears for the medical. She was phenomenal,” Conro says.

An X-ray showed he had pneumonia, and doctors prescribed antibiotics.

At first, the diagnosis was scalded skin syndrome.

Then, after a biopsy of his arm, doctors determined it was Toxic Epidermal Necrolysis.

“It’s really, really rare. I’d never heard of it,” Conro says.

On Saturday, July 7, Colton was flown to Portland and admitted to the Oregon Burn Center at Legacy Emanuel.

As his skin sheds, infection control is of utmost importance.

“Your skin is your protection,” Conro says. “When your skins sloughs off, that’s when infection can set in.”

His body is now covered by an “acticoat,” which Conro describes as silver netting resembling cheesecloth.

“That’s his temporary skin,” she said.

It’s activated by water, which is spritzed on the covering.

She said his eyes are peeling on the inside and out, as is the rest of his body.

She said it takes the skin two weeks to regenerate, so they will be at the Burn Center for at least that long, and maybe three weeks.

“It’s really, really tender, like baby skin,” she says.

When asked how Colton’s doing, her voice swells with emotion.

“Spiritually he is my hero,” she says. “He is so strong and so compassionate.”

But a bit bored.

“It’s hard to find something for a kid who’s 14 and loves to text but can’t see.”

Colton’s temporary address is Legacy Oregon Burn Center, 3001 N. Gantenbein Ave., Portland, OR 97227.

He’s in ICU room 6.

The only restriction is no live flowers.

While there, Conro is staying at the Ronald McDonald House (RMH).

A Colton Ficek Medical Fund has been set up at U.S. Bank. The account number is 153664727416.

Also, the Elkhorn Restaurant in Sumpter will kick off a month-long bake sale fundraiser starting tonight.

Conro says she can’t think about the medical bills yet.

“When it’s life and death and it’s your kid, it doesn’t matter.”

She also asks for support of the RMH.

“Donate to the Ronald McDonald House — it’s a phenomenal place.”

She especially requests prayers.

“Prayers for a miracle, and for people who are suffering like him.”

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