At 12, he had stopped growing. Doctors were stumped. The answer was in his gut.

At 12, he had stopped growing. Doctors were stumped. The answer was in his gut.
By Sandra G. Boodman
Feb 6 2017

Why is he so tired, Jackie Mann wondered, not for the first time, as Evan, the middle of her three children, wandered off to his bedroom to take an after-school nap.

Small for his age, the 12-year-old seemed to fall asleep easily and anywhere: in the car on the way to soccer or gymnastics, on the afternoons he came straight home from school, while doing his homework and, once, while waiting to see the pediatrician.

But his parents noticed that Evan seemed decidedly more energetic on the weekends in the semirural community outside Oakland, Calif., where the family lives. Then he went fishing, hunting and hiking with little difficulty.

“We just kind of thought he was faking it,” said Mann, recalling the discussions she and her husband, an orthopedic surgeon, had about Evan beginning in 2010. “He would step it up with his friends.”

But Mann’s concerns intensified after a trip to Lake Tahoe, where the family rents a cabin. Evan, an avid skier, would complete a run or two, complain that he was tired and go back to the cabin to sleep for several hours.

For 18 months, as Evan’s fatigue worsened, his growth stalled and he wrestled with unexplained low-grade fevers and joint pain, a series of doctors sought to figure out what was making him sick.

The answer, when it came in January 2012, was a surprise. While his mother said that in retrospect there were abundant clues, there were also red herrings that misled doctors, including those in Evan’s family.

“Evan did not have the typical symptoms,” his mother said. “Sometimes the pieces don’t fall into place until things get really bad.”

Genetics, or something else?

Mann’s initial concern was not her son’s fatigue.

When Evan was in fifth grade, she began asking the pediatrician about his unusually small size. But the doctor, who told Mann that he didn’t believe in growth charts, a cornerstone of pediatric practice, was reassuring. All of her children were small, he pointed out, a reflection of genetics. Their father, a long-distance runner and former college gymnast, is 5-foot-6 and Mann is 5-3.

Despite the pediatrician’s reassurance, Mann felt uneasy. And she was baffled by Evan’s fatigue, which continued even after he dropped several after-school activities. In the spring of 2011, Evan, during a long wait to see the pediatrician, fell asleep on the exam room table.

That was when Mann decided to switch doctors, fearing that her concerns weren’t being taken seriously. At the time Evan weighed 63 pounds and was 4-4, seven inches shorter and 25 pounds lighter than average for a boy his age.

“This just didn’t feel right,” she recalled. She also found an allergist to determine whether Evan’s frequent sinus infections were the result of allergies that might be impeding his growth and causing his fatigue. As a child, he had taken antibiotics frequently for ear infections, and he was often prescribed the drugs for sinusitis as he got older.

But the work-up found no allergies.



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