The Humble Rheumatologist
When they can’t figure out what’s wrong with a child, they send her to Dr. Lynn Punaro, one of only 220 pediatric rheumatologists in the country.
As Tauni and Jayd McFerson settled into bed next to their baby Coen, they waited impatiently for the inevitable. Once Coen fell asleep, Jayd would pull the child onto his chest so he could try to hold down his son’s leg when it started shaking. “It’s a crazy thing,” he wrote on his blog. “I am a 200-pound guy, and sometimes I just can’t hold it back. To see his little face writhe in pain through cramp after successive cramp is torture.”
There were times when Tauni thought, “I can’t watch it tonight. I can’t watch my son scream like this.”
Tauni and Jayd noticed something was wrong with Coen when he was 4 months old. They started calling him their “little flamingo,” because he would never put all his weight on his left leg. But by the time he was 10 months old, things were more serious. Whether it was nighttime or just a nap, Coen would wake up, screaming, his left thigh in pain. The family had seen all the specialists, and Coen had been subjected to myriad tests. Within 15 minutes of a visit to a pediatric rheumatologist in his hometown of Austin, Coen was diagnosed with juvenile arthritis. But the McFersons weren’t convinced. The family decided to keep searching for answers. In the meantime, Coen wasn’t getting better.
After three months, the McFersons’ search led them to Texas Scottish Rite Hospital and to the doctor who would heal their son.
“Most of my cases you can’t cure, you treat,” Punaro says. “I usually have people crying quite a lot when I tell them their child has a chronic disease. That’s hard to hear.”
Dr. Lynn Punaro, 58, was drawn to the small field of pediatric rheumatology when she was a resident in medical school at Tulane University. The New Orleans native was reading a medical journal focused on lupus, and she thought, “This is so amazing. I want to study this.” She lights up as she explains the complexities of the disease. Now the director of arthritis services at Scottish Rite and a professor of pediatrics at UT Southwestern is one of only 220 pediatric rheumatologists in the country. Dallas has just a handful of pediatric rheumatologists (Dr. Virginia Pascual, who is a good friend of Punaro’s and works at Baylor mainly in the lab, and four others who are recent fellows).
Pediatric rheumatologists take care of autoimmune diseases that affect the joints and other organs, Punaro explains while sitting behind a tall stack of papers and eyeing an almost-finished paper on her computer. “All my diagnoses are what are called diagnoses of exclusion, elimination. It’s only that if it’s nothing else,” she says.
One of her patients compares her to the ill-tempered Dr. Gregory House, from the eponymous FOX TV show. She handles the cases that no one else can figure out. Except Punaro has a better bedside manner than House. The strawberry blonde only laughs at the notion that she’s like some TV doctor. She doesn’t even watch House, because, she says—slowly, carefully, the way she would explain a disease to a child—the show doesn’t reveal all the pertinent information about a patient, making it impossible to reach a diagnosis. Vince Punaro, her husband of 35 years, laughs at his wife’s methodical way of analyzing a TV program. He says part of her scrutinizing nature came from her father, a civil engineer with Shale Oil. “He had this really analytical mind,” Vince says. “He could solve any problem. She can solve any problem, but it’s uniquely hers.”
And she’s seen many problems. “Most of the patients I see have already been to multiple doctors,” she says, glancing up at the board behind her desk. Covered in pictures, drawings, and thank-you cards, the board is a testament to Punaro’s work. “You do function as a consultant. And you get asked to see the very complex patients that people aren’t sure what’s going on. Sometimes you do figure it out. That’s a lot of fun.”
One such case was when she saw a toddler with a swollen knee. She later diagnosed this patient with tuberculosis, a condition which normally involves the lungs and is presented through a cough. Another time, she treated Dallas Cowboy Chad Hennings’ son, who had systemic juvenile rheumatoid arthritis. In another case, she used a new line of therapy to treat 11-year-old Jamal Anthony. A year after he was admitted in a wheelchair to the ICU, Jamal was back to playing basketball. “I can take a kid that maybe can’t sit up, and a year later, they’re riding their bicycles,” she says. “It doesn’t always happen, but it sometimes happens. If you can figure out what’s going on, you can really make a difference.”
Not every patient has such a happy outcome. “Most of my cases you can’t cure, you treat,” Punaro says. “I usually have people crying quite a lot when I tell them their child has a chronic disease. That’s hard to hear. I always tell them I’m going to get to know them very well, and we’re going to walk through this together. Often, I’m telling them their child may be on medication for years, maybe life. Actually, I make people cry quite a lot at first, but they come to like me later.”
Punaro is now working to help patients by drawing more doctors into her field. George Lister, professor and chairman of the department of pediatrics at UT Southwestern, was moved after reading an article about a journalist’s quest to find a rheumatoid pediatrician in Washington, D.C. “No one’s as passionate about the care of a patient as that child’s parent,” he says. “It was a tragedy that this individual couldn’t find someone for the care of his own daughter in our nation’s capital.” So he showed the article to Punaro and said, “Let’s do something about this.”
The obscure subspecialty, which requires an additional three years of training after residency, has received a lot of attention under Punaro’s care as division director of pediatric rheumatology and the training program director of the fellowship training program at UT Southwestern. “She has a long line of residents who are interested,” Lister says. “Somehow, she has conveyed to others a tremendous interest in the field.”
One of Punaro’s students is Dr. Alisa Gotte, a former fellow. She says her time with Punaro has been priceless. “We deal in a field where there are a lot of unknowns,” she says. “One thing she taught me was never slap a label on a patient unless you’re sure that’s what they have. Sometimes, if you pigeonhole someone in diagnosis, you forget to think about them, and then later science comes up with a clearer answer, and it passes you by because you limited your options.”
“You do function as a consultant. And you get asked to see the very complex patients that people aren’t sure what’s going on. Sometimes you do figure it out. That’s a lot of fun.”
A lot of unknowns—that’s exactly what the McFersons were facing when they brought their son Coen to Scottish Rite for an appointment with Punaro. And after eight months of driving back and forth from Austin to Dallas, the McFersons were starting to give up hope. “We didn’t see an end in sight,” Tauni says. “But at the same time, we couldn’t fathom Coen going through this pain any longer.” But they didn’t give up on Punaro, because they said they’d rather have no diagnosis than the wrong diagnosis.
Coen’s case was a perfect example of what Punaro means when she says hers are diagnoses of exclusion. Only by eliminating diagnoses, a time-consuming process, could she whittle down the possibilities until she found out what was wrong with her patient. “I say I don’t know a lot,” Punaro says. “You have to be humble to be a rheumatologist.”
In January 2009, Punaro scheduled another MRI for Coen, a toddler who by then understood the meaning of the word “pain.” “We didn’t expect any answers,” Tauni says. “We were pretty broken by this point.” But in that MRI Punaro noticed something unusual between Coen’s femoral head and his hip socket. A CT scan confirmed there was a bone the size of a pencil eraser in his hip socket. When an orthopedic surgeon removed the bone, he found a tumor, also known as an osteoid osteoma. The tumor was what was causing the night spasms.
It’s been a year since Coen’s leg was operated on. He is now a healthy 3-year-old who loves to spend time with his dad on the trampoline. On the one-year anniversary of their son’s surgery, Tauni and Jayd lay in bed talking until 2 am. “We just really reflected on how incredibly blessed we are that we had Scottish Rite, and that we had Dr. Punaro,” Tauni says. “We attribute Coen’s walking, his healing to Dr. Punaro 100 percent.”
At this point in the show, House would make some sarcastic remark about humanity being overrated and limp off with his cane. But not Punaro. Instead, she’ll call Coen to check up on him. And as she turns around to finish her paper, a card with an outline of Coen’s footprint reminds her of why she does her job. The card says: “Thank you for always having the mind of an incredible physician and the heart of a loving parent.”