Then one day --
The child who had slept through the night since infancy was suddenly afraid to go to bed.
The girl who had always been a good eater refused food.
Eventually she became so weak she required a wheelchair. She needed sunglasses because even ambient light was brighter than she could stand. Small noises seemed ear-piercing.
"Make them go away!" she said at the sound of chirping birds. "They are hurting my head."
But as horrifying as it was for her parents and older sister to watch
For more than a year, the family, who lives in
Not every doctor
has right answer
Diagnostic errors -- generally defined as delayed, missed and inaccurate diagnoses -- account for an estimated 40,000 to 80,000
While advocates like Graber are working to bring attention to misdiagnosis and its role in patient safety, it remains what a 2015
"Diagnosis is a conversation, that is for sure. It takes both parties and, particularly if the health-care provider isn't heading the right way, it is absolutely incumbent on patients to do their own research," says patient safety advocate
With more than 10,000 diagnosable conditions plus an estimated 200 new ones each year, and more than 5,000 laboratory tests, not every doctor can have the right answer. The
Yet autopsies are conducted in fewer than 6 percent of hospital deaths, down significantly from the mid-1900s. Patient safety advocates say doing more of them could help doctors better spot patterns in diagnostic errors.
Improved communication between providers and patients also could prevent another problem in
"There are three major players -- the patient, the doctor and the health-care system -- and for sure a lot of the onus is on the patient," says Graber, who is a professor emeritus of medicine at the
"In an ideal world, and with a terrific health care system that would not be the case. But we are a long, long way from that. In the meantime, you really have to watch out for yourself."
It wasn't Crohn's
A series of tests didn't turn up with anything except that Bentley was low on vitamin B12. That could be due to a number of things -- trauma, poor diet, extreme alcoholism, irritable bowel syndrome and, in rare cases, lymphoma.
Bentley never did resolve his toe problem. But learning that he was low on B12 made him wonder about his health.
By the fall of 2007 he told his wife about some other problems he'd been having -- watery diarrhea three or four times a day, pains in his abdomen that felt like spasms, and a hard mass in his lower abdomen.
She told him to go to the doctor, and a local gastroenterologist diagnosed Crohn's disease. Bentley began keeping a diet diary and started two prescription drugs for the Crohn's -- Entocort and Asacol.
As it turned out, he did not have Crohn's disease. But it would not be until
"Guys can be dumbasses sometimes," he says. "I was in shape and I downplayed my symptoms. When my symptoms didn't resolve, I eventually did speak up but I didn't do it right away, and I didn't ask enough questions."
While on the Crohn's disease drugs, Bentley felt increasingly lethargic. He still had abdominal cramps and was battling sinus infections and shortness of breath. Then his bowel movements turned black.
More than a year after the Crohn's diagnosis, Bentley went back to the same
Chemotherapy and radiation sent the disease into remission by
As retail manager for The Core,
"If you are an active and engaged patient, you are going to be a great patient," says Bentley, 50, who is also president of the Southern Arizona Roadrunners.
"Doctors are smart, but so are you. Doctors go to school for a long time and know a lot of big words. But don't be intimidated by this. Patients have to be engaged. They have to ask the questions."
Indeed, Graber of the Society to Improve Diagnosis, says problems with communication are often at the root of diagnostic errors.
"Doctors have so little time and patients feel like they are not being listened to," he says. "Part of it is saying, 'I don't think you are listening to me. I don't think you are getting this. I think I need a second opinion.'"
Doctors should welcome patients who seek second opinions because fresh eyes catch mistakes, Graber says.
"Trying to get an expert as soon as you can is very important," he says.
As medicine evolves, new discoveries change old assumptions.
The researchers, calling their findings a "cautionary tale," found genetic testing was misdiagnosing some patients as having the condition when they didn't. The testing was based on studies that did not account for racial variants, the study concluded.
Patient profiles for certain diseases can change over time, too. Throat cancer, for example, was historically linked to smoking and alcohol use and seen in older patients. It is now being seen in seemingly healthy middle-aged men who have never smoked.
Not a hypochondriac
Among tips for patients -- no news about a test result is not always good news. In other words, follow up. Also, test results aren't always right -- and even if they are, they don't tell a complete picture.
"Tests should not be treated as an answer, but an aid," says Haskell, who in addition to her work with Mothers Against Medical Error is co-chair of the patient engagement committee at the Society to Improve Diagnosis in Medicine.
Holland Barr's parents say their daughter's primarycare physician provided much-needed support during the two years they visited dozens of doctors, including kidney specialists, gastroenterologists, psychiatrists and pain management specialists in
Among the diagnoses they heard were Lyme disease, lactose intolerance, babesia, abdominal migraines, a possible brain tumor, obsessive compulsive disorder, anxiety. One doctor said
"You don't know my daughter," Blandini found herself repeating. "She has no history of hypochondria."
Blandini's entire family, including older daughter Halston, was in a constant state of stress.
Their experience isn't unusual, says Haskell, of Mothers Against Medical Error.
"When doctors can't reach a diagnosis they are far too quick to jump to a psychiatric diagnosis," she said. "They say, 'If I can't figure out what this is, it must be imaginary.'"
Cancer that wasn't
Wilkinson, who was then 58 years old and had never smoked, put out the word that she was looking for any and all resources about non-small cell lung cancer. She got her affairs in order. Her daughter flew in from
But when surgeons removed what they believed was cancer from the upper left lobe of her lung, the pathology did not show cancer. Rather, it was coccidioidomycosis, a respiratory disease endemic to
The disease is frequently misdiagnosed by doctors from other parts of the country who are not familiar with it, says Dr.
Wilkinson harbored no anger for her doctor, who didn't attend medical school in the Southwest. In fact, some good came out of the ordeal. Her relationships improved. She got out of a marriage that was no longer working and she began doing Pilates. One of the most important things she did, she says, was to begin volunteering with the
Her experience and outreach already are helping others. When one of her friends, who lives in
Diagnostic errors are the leading type of paid medical malpractice claims, the 2015
Three misdiagnosed conditions most commonly leading to insurance claims are cancers, infections and cardiovascular conditions, says Graber, of the Society to Improve Diagnosis in Medicine.
Four types of infections are most often associated with sepsis, which the
Sheri called the hospital several times while Jared waited, saying her son was in pain and needed help. The state report indicates hospital officials told her that sicker patients needed to be seen first, and that he was being checked on.
The father of two waited for seven hours and left without being treated, a state report and court documents say. About 11 hours after leaving, the state report says Jared went to another hospital and was admitted to the intensive-care unit with sepsis. He died
The incident prompted TMC, which has the state's third-busiest emergency department, to make several changes to its emergency-room processes and procedures, including ensuring it checks the vital signs of patients in the waiting room every two hours.
TMC and other local hospitals are also working on ongoing programs to improve sepsis detection, particularly in the emergency department.
An answer for
The patient was a 12-year-old girl who described having obsessive compulsive disorder, or OCD. But unlike a typical OCD case, the girl said she could pinpoint the hour and day her symptoms began.
She had been at the pediatrician and, on the way out, picked up a wrapped and unused hypodermic needle someone had dropped in the parking lot. She put it in the garbage and by the time she got home she was convinced she had rabies from touching it.
On further questioning, Swedo and her colleagues discovered the girl was at the pediatrician for her third strep infection in a month. Her obsessions had been brought on by her body's misdirected reaction to the strep infections.
It was a similar story for Holland Barr, whose symptoms left her so sick earlier this year that she said goodbye to her family. She told her mother that life was too hard, that she wanted to die.
In the end she was saved by a correct diagnosis of autoimmune encephalitis, more specifically PANS -- pediatric acute-onset neuropsychiatric syndrome.
One of Blandini's friends had suggested
PANDAS and PANS occur when a child's body, while fighting off a virus or infection, mistakenly targets or disrupts a part of the child's own body. The illness causes the immune system to attack the brain and results in a range of neuropsychiatric symptoms.
Treatments can include antibiotics, immunosuppressants and, for serious cases, infusions called IVIG, which stands for intravenous immunoglobulin. Parents of children with the disorders describe how receiving IVIG is like "turning the light back on."
Throughout her daughter's journey, Blandini recorded each doctor visit. If not for her diligence,
Her advice to other parents with a sick child: Trust your instincts, be persistent and do your own research.
"The doctors aren't magicians," she says. "They are human beings like us. They can make mistakes."
Reporting for this project is supported by a grant from the nonprofit
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