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With infection, TB ruled out, teen's rare illness discovered

By John Kelly
Tuesday, December 29, 2009; B02

"Normally I'm really healthy and I don't complain about anything," said Angelo Seneviratne, a 16-year-old from Rockville.

Ah, the invincibility of the teenage male, a trait that carries on to adulthood, when men shake off anything less acute than a severed limb. Of course, we sometimes want our teenagers to complain, even the ones who always seem healthy.

Such was the case with Angelo, who two summers ago was unable to beat what appeared to be a persistent sinus infection. "Which is weird," Angelo said, "because I'm not allergic to anything." That was followed by pinkeye. The nursery-school scourge hung around for nearly two months. Steroids seemed to help, but then the allergies worsened.

"I got a really bad cough when I was in Ocean City for Fourth of July," the Richard Montgomery High junior remembered. "Soon after that I started coughing up blood, which I also didn't tell my parents about. I thought it would go away."

Angelo's friends thought they had the solution: Maybe you just need more exercise, they told him.

"So I went out and played soccer," Angelo said, "which was bad. . . . It didn't make me better."

Angelo got worse. He coughed up more blood, was wracked by headaches and then gripped by a fever that rose to 103.5 degrees. His parents took him to a hospital in Montgomery County, where he was put in isolation and attended to by space-suited nurses and doctors. Angelo's family is from Sri Lanka, and he had recently traveled to that island nation, where tuberculosis is endemic. Physicians were afraid he might be infected with a drug-resistant strain.

The standard TB regimen was having no effect. Children's National Medical Center sent a transport crew for Angelo. "They were playing 'Cars' on the TV in the ambulance," Angelo said. "That's the last thing I remember."

What Angelo knows about his experience at Children's is contained in a bulging notebook carried by his mother, Bernadeen.

"In critical cases, when I see the mom with the book, that's a good sign," said one of Angelo's doctors, Angela Wratney, a critical care specialist at Children's. A well-ordered notebook means the family is involved.

Angelo wasn't suffering from TB but from a rare autoimmune disorder called Wegener's granulomatosis. In Wegener's, the body attacks its own vascular system. Blood vessels in the sinuses, lungs and kidneys become inflamed. Capillaries in the eyes can leak, too. (It wasn't pinkeye that Angelo had.) The body bleeds into itself.

Angelo's decline continued, requiring that he be placed on a ventilator, then hooked up to an ECMO -- extracorporeal membrane oxygenation -- machine. He spent six days on ECMO, time that allowed his ravaged lungs to heal while he awaited the diagnosis and the standard Wegener's treatment was started: high-dose steroids. (The steroids given for the erroneous pinkeye diagnosis explain Angelo's temporary improvement.)

After a month at Children's -- half of that spent in the intensive care unit -- Angelo went home. He relearned how to swallow and toned his atrophied muscles. Angelo probably survived the ordeal by being in such good physical shape to begin with.

The experience changed him. He remains humbled by the prayers from extended family all over the world. And he thinks the experience of being on the ECMO machine -- the tubes, motors and filters doing the job of his heart and lungs -- altered him in some way, too. "I feel like I'm thinking differently," he said.

How so?

"I think more logically now. I can't really explain. I'm doing better in school."

When I met Angelo recently, he was reading a book about a disastrous Navy SEAL mission in Afghanistan, the sort of gung-ho nonfiction that appeals to many teenage boys. He showed me its title: "Lone Survivor."

"Kind of ironic," Angelo said.

Racing to our goal

We're down to the final two weeks of this year's fundraising campaign for Children's Hospital. You can help provide critical care for needy children by making a tax-deductible donation. Send a check or money order payable to "Children's Hospital" to Washington Post Campaign, P.O. Box 17390, Baltimore, Md. 21297-1390. To donate online using a credit card, go to http://www.washingtonpost.com/childrenshospital. To give by phone using Visa or MasterCard, call 202-334-5100.

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