A year after her daughter’s stomach problems began, Margaret Kaplow began having pains of her own.
When she sat down to dinner with her family, Kaplow’s gut would clench involuntarily as she waited to see if this was one of the nights Madeline would eat a few bites before putting down her fork, pushing away from the table and announcing, “I don’t feel good.”
For nearly six years, Maddie Kaplow’s severe, recurrent abdominal pain, which began shortly before her 13th birthday, was attributed to a host of ailments. Specialists in the District, Maryland and Virginia decided at various times that she had a gluten intolerance, a ruptured ovarian cyst, a diseased appendix or irritable bowel syndrome (IBS). Some were convinced that her problem was psychological and that she was a high-strung teenaged girl seeking attention.
“It was a freaking nightmare,” Kaplow recalled of those years. She said she never believed her daughter was exaggerating or faking her symptoms. And each time a new diagnosis was made, Kaplow said, she felt elated that a doctor had figured out the cause of Maddie’s pain, which would turn into crushing disappointment when it recurred.
It was only after she landed in a college infirmary 400 miles from her Northern Virginia home that doctors finally determined what was wrong and treated Maddie for the illness that dominated her adolescence.
“It was years of total frustration,” said Maddie, now a 22-year-old college senior. “It got to the point that I almost felt at times that I was making it up.”
Maddie remembers when the episodes started: in February 2003 during French class at a Fairfax County middle school. The sharp pain, often accompanied by nausea, was concentrated on the upper right quadrant of her abdomen, close to her rib cage, and extended to her back between her shoulder blades. When it didn’t go away, her mother took her to the pediatrician.
“She couldn’t find anything,” recalled Kaplow, the education services manager of The Post. The pain disappeared after a few days, then recurred about six weeks later. The pediatrician suggested that Maddie keep a food log to see what might be triggering it. When that didn’t reveal anything, she referred her to a pediatric gynecologist in the District. The gynecologist found nothing and sent Maddie to a pediatric gastroenterologist, whom she saw that May.
The gastroenterologist decided her problem was constipation and gave her a diet to follow, along with a recommendation to avoid wheat in case she had a sensitivity to gluten. Although the constipation cleared up, the pain, which was sometimes accompanied by diarrhea and chills, did not. Avoiding gluten didn’t seem to make a difference.
The gastroenterologist then recommended an endoscopy and colonoscopy, procedures for inspecting her upper and lower intestines. The colonoscopy found nothing, but the endoscopy revealed duodenal ulcers in the spot where the pain seemed concentrated. Maddie began taking medicines, including Nexium, a drug that blocks the production of excess stomach acid, but they did little to affect the pain, which seemed to be triggered by eating.
When the pain became too severe and needed to be treated with narcotic painkillers, Maddie would wind up in a Northern Virginia emergency room, an event that would occur about 18 times over a six-year period. Kaplow said Maddie’s pediatrician didn’t seem overly concerned, because she wasn’t losing weight. “The doctors kept saying, ‘Well, it’s not like she's wasting away.’ ”
During one visit, an ER doctor thought he had found the culprit: A CT scan showed a possible ruptured ovarian cyst. No treatment was required, and the hope was that once it went away, so would her pain.
By May 2004, a surgeon consulted at the suggestion of Maddie’s gastroenterologist decided to remove her appendix. If nothing else, the doctor told her mother, removal of the organ would enable doctors to rule out appendicitis as the cause of any future episodes. “I just don’t know what else to do,” Kaplow said he told her.
Initially, it looked like a good call: Although the surgeon thought the appendix looked healthy, a pathologist said it showed early signs of disease. “We were thinking, ‘Okay, now we’ve got it,’ ” Kaplow recalled.
But their relief was short-lived. Three months later, Maddie was back in an ER with intense pain. This time, an ER doctor, citing her extensive work-up and recent appendectomy, proposed that Maddie’s illness was psychological.
Kaplow said she was furious at the suggestion that her daughter’s problem “was all in her head. I thought the pain was causing her anxiety, not the other way around.”
In 2005, Maddie began seeing a new gastroenterologist. He seemed attentive and concerned and decided she had IBS, a common but ill-defined malady characterized by bouts of abdominal pain, nausea and diarrhea. He switched medications and performed a second endoscopy and colonoscopy: Both were normal, and her ulcers had healed.
“We were hopeful that maybe IBS was the problem” her mother recalled.
But over the next few years, Maddie’s condition worsened as the episodes became more frequent and the pain sometimes grew unbearable. The family alternated between two emergency rooms. “Each time, we kept hoping that a new set of eyes would get to the bottom of it,” Kaplow recalled.
Maddie flatly refused to see the pediatrician who had repeatedly made it clear she thought the teenager was exaggerating. “She was so skeptical, she would say in this singsong voice, like a kindergarten teacher, ‘What is it today, Maddie?’ ” her mother said.
The pain became something she just learned to live with. “It was odd, because I was hungry but nauseous,” Maddie recalled. “And if I pushed my stomach out, it felt better.” Somehow she got through a demanding curriculum in high school, despite frequent absences due to illness.
In April 2008, while a freshman at the University of Rhode Island, Maddie had an episode while she was home on break and decided to seek help at an urgent care center in McLean. A doctor there suggested her problem might be related to her gallbladder and recommended further testing.
Kaplow said that when she told the pediatrician about the recommendation, the doctor was unimpressed. Kaplow had previously told the pediatrician and other doctors that she and her three sisters had all had their gallbladders removed before they were 40 because they had gallbladder disease, which can run in families. The pediatrician said that Maddie’s tests showed no gallstones and that gallbladder problems would be rare in a teenager. She declined to order a gallbladder scan and instead recommended a third colonoscopy and endoscopy, both of which were normal.
In January 2009, Maddie experienced her most severe attack two days before she was due to fly back to Rhode Island from home. Earlier that week, she had seen a prominent gastroenterologist in Baltimore, hoping he could provide an answer. The doctor prescribed an anti-anxiety drug but decided a gallbladder scan could wait until summer. He ordered a test for celiac disease, which produces abdominal pain and diarrhea and is caused by an inability to digest gluten, although a previous wheat-free diet hadn’t helped.
“I thought, ‘Hey, maybe it’s celiac,’ ” Kaplow recalled.
Panicked by the severity of the episode — Maddie was in so much pain that she was unable to get out of bed — Kaplow made a flurry of frantic phone calls over the Martin Luther King holiday weekend. A Northern Virginia gastroenterologist prescribed pain medication, and “somehow she got on that plane,” her mother recalled.
Two days later, still in intense pain and unable to eat, Maddie went to the university’s student health center. A doctor there ordered a HIDA scan, an imaging test that uses radioactive dye to track the flow of bile through the digestive system and is used to detect gallbladder diseases.
The result left little doubt about what was wrong and what needed to be done. The scan showed that Maddie had profound biliary dyskinesia, also called acalculous cholecystopathy; the condition, which is marked by pain in the upper right quadrant of the abdomen and the absence of gallstones, is uncommon.
The test measured the ejection fraction of her gallbladder, an assessment of how well the organ is squeezing out bile; at 3 percent, it was abnormally low. People with an ejection fraction below about 40 percent are candidates for surgery to remove the gallbladder, according to the American Pediatric Surgical Association, which notes that biliary dyskinesia occurs mostly in older children and adults.
Although surgery does not guarantee that the pain will disappear, it appears to be effective in 70 to 80 percent of cases.
“We don’t understand much about this entity,” said Umberto Capuano, the general surgeon in Wakefield, R.I., who made the diagnosis. Once thought to be rare, particularly in children, doctors are seeing more cases, he said.
“She’s just one of a number of young ladies who’ve struggled for years” whom Capuano has treated, he said. “Every one of them got better after surgery.”
The surgeon said he is not sure why nearly all of the many doctors who treated Maddie failed to consider that her gallbladder might be the problem.
“There are regional differences in health care,” he said. But her significant family history of gallbladder disease “would certainly alert you.”
When Kaplow heard about the scan results and the plan to remove her daughter’s gallbladder, she burst into tears. “I thought, ‘Oh, my God, there’s going to maybe finally be an end to this.’ ”
Although laparascopic surgery was scheduled for late February, Capuano operated several weeks earlier, soon after Maddie was hospitalized with another severe gallbladder attack.
For Maddie, who has since transferred to Tulane University, the operation ended her pain. “I haven’t missed a class, and I can eat whatever I want,” she said.
Her mother said the experience has made them both wary of doctors and angry that Maddie was too often regarded as a hysterical teenager.
“As stupid as this sounds,” Kaplow said, “I was raised that if a doctor tells you something, it’s gospel, like the priests: They know better than we do. Now if I suspect something, I’m definitely more proactive.”
When she told Maddie’s former pediatrician what had happened, she said the response was not what Kaplow had hoped. “She said, ‘I’m so glad it’s been taken care of,’ ” Kaplow said, “not, ‘I’m sorry for all those years.’ ”
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