Ever since he was a toddler, Michael had been beset by an array of medical problems that doctors couldn’t explain.
Severe leg pain came first. That was followed a few years later by recurrent, sometimes severe, stomachaches. Later, the little boy developed a wracking cough, followed by trouble breathing. In fifth grade, after he fell and smacked his tailbone, he was in so much pain he wound up in a wheelchair.
His worried parents took him to four emergency rooms and an array of Washington-area specialists, among them orthopedists, neurologists, pediatricians and a gastroenterologist. Yet virtually every test failed to uncover a problem.
It would take a seasoned pediatrician to pull together the disparate elements of the 10-year-old’s medical history and make an unexpected diagnosis that would prove to be a turning point for the boy and his family.
Three years later, Michael, now 14 and a freshman in high school, seems to have moved beyond the disorder that dominated his first decade.
We’re rule followers when it comes to doctors, and if someone had said to us that we should get a series of counselling sessions, we would have.
His father said he believes his son’s illness resulted from “a perfect storm” of factors. He would have preferred that the doctors who saw Michael had spoken “a little more freely about their guesses” and had provided more guidance. To protect Michael’s privacy, his parents requested that he and they be identified by their middle names.
A child in pain
When he was nearly 2, Michael, who had been previously healthy, began limping and then stopped walking. His pediatrician found no obvious explanation and sent him to a pediatric neurologist, who ordered an extensive work-up, including scans and blood tests. After ruling out possible causes including juvenile arthritis and cancer, the toddler was diagnosed with idiopathic joint swelling - joints that were swollen for an unknown reason. Michael’s father, Ralph, said the boy received no treatment, and after a week, the problem went away on its own.
The following year, Michael woke up one morning, screaming that his knee and stomach hurt. His parents took him to a nearby ER. Doctors could find nothing: Michael was able to walk, had no fever and did not seem to be in pain when he was touched. After several hours, doctors sent him home. A day later, he was running around and seemed fine.
Several months afterward, the stomachaches returned, sometimes accompanied by diarrhea. Ralph’s sister, a primary-care physician in New England, wondered whether he might have contracted a parasitic infection during a vacation in the Dominican Republic. But tests ordered by the pediatrician ruled out parasites.
For the next year, Michael’s stomach and joint pain recurred periodically, prompting a trip to another ER.
“Generally we’re people who underreact” to physical complaints, Ralph noted. He and his wife, Maria, tried not to make too much of their younger son’s ailments, fearing it might encourage him to inappropriately “seek attention.”
At the time, the family was contending with other problems: Michael’s older brother was struggling with attention deficit/hyperactivity disorder, which caused conflict with Ralph. Maria suffered a serious case of pneumonia that required hospitalization. And Ralph underwent several knee surgeries and then battled life-threatening blood clots following a mountain climbing trip in South Asia.
In 2013, when Michael suffered food poisoning after eating a hamburger at a water park, his intense stomach pain lingered long after the diarrhea and vomiting passed.
He saw a pediatric gastroenterologist, but tests failed to find anything that would account for pain that had caused Michael to miss 17 days of school in one semester. The doctor suggested that Michael’s stomachaches might be related to diet and stress.
After a session with a pediatric psychologist, his pain seemed to diminish. Michael, who tended to keep his feelings to himself, confided to his parents that he had been having problems at school and was afraid they might die because they had been sick.
A year later, in December 2014, he was back in an ER with a wracking cough and difficulty breathing. Asthma and other disorders were ruled out, and a doctor initially diagnosed a vocal cord dysfunction, which occurs when the voice box doesn’t open properly. That diagnosis was soon discounted; a few weeks later, the cough and breathing problem disappeared.
The following month, Michael fell on a patch of ice in his driveway, injuring his tailbone and lower back. His parents took him to an urgent-care facility, then to an orthopedist. Neither an X-ray nor an MRI scan showed an injury that would account for his intense pain. Because walking seemed excruciating, his parents rented a wheelchair.
“This is the real point where things went to hell,” Ralph recalled.
Three weeks later, Michael was still complaining of severe pain and seemed unable to walk. His parents took him to an ER.
The seasoned pediatrician who saw him was both blunt in his assessment and specific in his advice.
Get rid of the wheelchair immediately, he recommended. Your son doesn’t need it. No identifiable reason for his back pain had been found - and Michael’s medical history was littered with similar incidents that resulted in numerous tests but no findings.
Michael, he said, was suffering from a somatic symptom disorder, popularly known as psychosomatic illness. His pain was real, but its origin was psychological, not physical.
The doctor advised a multipronged approach to treatment: Michael should see a child psychiatrist who specializes in medically unexplained physical symptoms, and begin physical and occupational therapy to ease his pain and restore his ability to walk normally. The family should begin family therapy sessions to explore family dynamics that might be contributing to his problem. Further medical care should be coordinated through a primary-care doctor to prevent scattershot visits to specialists and additional unnecessary tests.
Ralph recalled that the doctor recommended that he and his wife use firm reassurance “that acknowledges that he is feeling pain and that they will help him get better. Say things like, ‘We need to retrain your body, you must move through the pain, you will be better.’ “
Children who develop a somatic disorder, which can start in preschool, often see a host of specialists and undergo extensive testing that yields few or no results. The disorders are a product of the mind-body connection. In essence psychological stress results in physical symptoms. (A tension headache is one such example).
In some cases, people who develop somatic disorders may experience sensations such as nausea or pain from a pulled muscle more intensely or frequently than expected. The disorder can arise after a major change in a child’s life - a parental divorce or serious illness in the child - or as a result of family conflict or in families where children receive attention for physical but not emotional difficulties. Genetic factors may play a role.
Despite a release signed by Ralph, the child psychiatrist who saw Michael for several months declined to be interviewed, saying that he never discusses patients.
Medical records show that during their sessions Michael expressed many fears that he had long kept to himself: that his own health was in peril and that he had not felt safe “for years.” He also reported that he was having problems at school and was particularly upset by the contentious relationship between his father and brother related to his ADHD.
“I think Michael worried that he was going to be next,” Ralph said.
Somatic disorders can be difficult to treat “particularly if the family doesn’t accept the diagnosis,” said Roberto Ortiz-Aguayo, associate chair of child and adolescent psychiatry at Children’s Hospital of Philadelphia, who is both a pediatrician and a child psychiatrist. Some families balk, insisting that doctors simply haven’t found the underlying cause of a physical problem.
Even if doctors suspect a child has a somatic disorder, he noted, they may be reluctant to make the diagnosis for fear of alienating the family.
Somatic disorders are common, Ortiz-Aguayo continued, and represent “a huge source of dissatisfaction for physicians who are always worried: What if I missed something?”
Malingering - faking illness - is very rare in children, he added.
Ralph said that he and his wife accepted the diagnosis and worked to execute the treatment plan. They had not known, he said, that Michael was so worried about his parents’ health or about the then-fraught relationship between his older brother and father. Had they known, Ralph said, they would have made an effort to talk openly about these fears with him.
The child psychiatrist recommended that Ralph sit with his son every night at bedtime to allow Michael to discuss his feelings.
“I figured, ‘Well, hell, I can do psychotherapy,’ “ Ralph said. Michael was eager to talk. After several rocky months his symptoms receded, and he was able to walk normally without pain.
Michael recalled that his doctors were open with him about what was wrong. “They said it in the nicest way possible,” he said. “They gave me some hope” things would get better.
For the past three years, he has shown no signs of a recurrence, even after two surgeries for a sports-related injury.
His father wishes that doctors who suspected a somatic disorder had been more direct, which might have short-circuited the years spent hopscotching from specialist to emergency room.
“We’re rule followers when it comes to doctors, and if someone had said to us that we should get a series of counseling sessions, we would have,” Ralph said. Instead, “we got dragged into the medicalization of it.”