17 Doctors Unable to Diagnose for 3 Years ChatGPT Accurately Diagnoses Chronic Pain in Children
Courtney bought a bounce house for her two young children during the COVID-19 lockdown. Soon after, her four-year-old son Alex started feeling pain.
"(Our nanny) started telling me, 'I have to give him Motrin every day or he's going to have a meltdown,'" Courtney told Today. She asked that her last name not be used to protect her family's privacy. "If he had Merrill Lynch, he would be totally fine."
Alex then started chewing things, so Courtney took him to the dentist. Alex spent the next three years searching for the cause of the worsening pain and eventually other symptoms.
His mother said Alex saw 17 doctors over three years for chronic pain, but no one could find a diagnosis that explained all his symptoms. Provided by Courtney
Earlier this year, Journey to the End began, and Courtney finally got some answers from an unlikely source: ChatGPT. The frustrated mother signed up for an account and shared with the AI platform everything she knew about her son's symptoms and everything gleaned from his MRIs.
"We saw a lot of doctors. We were admitted to the emergency room at one point. I just kept trying," she said. "I literally spent the night on (the computer) ... going through all this stuff."
So when ChatGPT suggested a diagnosis of tethered cord syndrome, "it made sense," she recalls.
Pain, teeth grinding, leg dragging
When Alex started chewing, his parents wondered if his molars would grow in and cause pain. As the situation continued, they thought he had cavities.
"Our lovable personalities - for the most part - (the kids) were melting into this crazy person with a tantrum that didn't exist at other times," Courtney recalled.
The dentist "ruled everything out" but thought Alex might be grinding his teeth and believed an orthodontist who specialized in treating airway obstruction could help. The dentist believed that the blocked airway was affecting the child's sleep and could explain why he seemed so tired and moody. The orthodontist discovered that Alex's palate was too small for his mouth and teeth, making it more difficult for him to breathe at night. She placed an expander in the roof of Alex's mouth and things seemed to be improving.
“Everything is a little better,” Courtney said. "We thought we were in the home stretch."
But then she noticed Alex wasn't growing any taller, so they went to see their pediatrician, who believed the pandemic was negatively affecting his development. Courtney did not agree, but she still brought her son back for a check-up in early 2021.
"He's grown up a little bit," she said.
The pediatrician then recommended that Alex undergo physical therapy because there seemed to be some imbalance between his left and right sides.
"He would lead with his right foot and follow with his left," Courtney said.
But before starting physical therapy, Alex was already experiencing severe headaches that were only getting worse. He visited a neurologist, who said Alex suffered from migraines. The boy also struggled with exhaustion, so he was taken to an otolaryngologist to see if he was having sleep problems due to his sinuses or airway.
No matter how many doctors a family sees, experts will only address their respective areas of expertise, Courtney said.
"No one wants to address the bigger problem," she added. "Nobody gives you any clue about the diagnosis."
Next, a physical therapist thought Alex might have a congenital disorder called Chiari malformation, which causes defects in the brain where the skull meets the spine, according to the American Association of Neurological Surgeons abnormal. Courtney began researching it, and they visited more doctors—a new pediatrician, a pediatric internist, an adult internist, and a musculoskeletal doctor—but again hit a dead end.
In total, they visited 17 different doctors over three years. But Alex still hadn't diagnosed all of his symptoms. Exhausted and frustrated, Courtney signed up for ChatGPT and began entering his medical information in hopes of finding a diagnosis.
"I went through everything in his (MRI notes) line by line and plugged it into ChatGPT," she said. "I put a note in there that said...he's not going to sit in a cross applesauce. That to me was a huge trigger that something structural could go wrong."
She eventually discovered tethered cord syndrome and joined a Facebook group for families of children with the syndrome. Their stories sounded a lot like Alex's. She scheduled an appointment with a new neurosurgeon and told her that she suspected Alex had tethered cord syndrome. Doctors looked at his MRI and knew what was wrong with Alex.
"She literally said, 'Here's spina bifida occulta, here's where the spine is tethered,'" Courtney said.
According to the American Association of Neurological Surgeons, tethered cord syndrome occurs when tissue in the spinal cord forms attachments that restrict its movement, causing the spinal cord to stretch abnormally. This condition is closely associated with spina bifida, a birth defect in which part of the spinal cord does not fully develop, leaving parts of the spinal cord and nerves exposed.
With tethered cord syndrome, "the spinal cord is stuck to something. It could be a tumor in the spinal canal. It could be a lump on the tip of the bone. It could be too much fat at the end of the spinal cord," said Alex, who treated Dr. Holly Gilmer, a pediatric neurosurgeon at the Michigan Head and Spine Institute in Texas, told TODAY.com. "The anomaly cannot be prolonged...and will be elongated."
In many children with spina bifida, the child has a noticeable opening in the back. But Alex's type is occlusive and is considered "hidden," also known as spina bifida occulta, according to the Centers for Disease Control and Prevention.
"My son doesn't have a hole. He almost has what looks like a birthmark on the top of his hip, but no one sees it," Courtney said. "His belly button is curved."
Gilmer said doctors often detect these conditions soon after birth, but in some cases may miss signs that indicate spina bifida occulta, such as dimples, red spots or tufts of hair. Doctors then make a diagnosis based on symptoms, which may include dragging the legs, pain, bladder control, constipation, scoliosis, foot or leg abnormalities and delays in reaching milestones such as sitting up and walking.
"Diagnosis can be difficult in young children because they can't speak," Gilmer said, adding that many parents and children don't realize their symptoms indicate a problem. "If they've always been like this, they think it's normal."
When Courtney finally got Alex's diagnosis, she experienced "every emotion in the book, relief, validation, excitement for his future."
ChatGPT and Medicine
ChatGPT is an artificial intelligence program that responds to input from people, but it can't hold a conversation or provide answers in the way that many people expect.
That's because ChatGPT works by "predicting the next word in a sentence or a series of words" based on existing text data on the Internet, said Dr. Andrew Beam, an assistant professor of epidemiology at Harvard University who studies machine learning models and medicine. TODAY.com. "Every time you ask ChatGPT a question, it recalls what it has read before from memory and tries to predict the text fragment."
Beam explained that when using ChatGPT for diagnosis, a person might tell the program "I have fevers, chills and body aches," and it would then fill in "flu" as a possible diagnosis.
"It will try to give you a text that looks like... the passage it read," he added.
Beam said that ChatGPT has a free version and a paid version, and the latter is much better than the free version. But both seem to work better as diagnostic tools than a general symptom checker or Google. "This is a super high-performance medical search engine," Beam said.
This could be especially beneficial for patients with complex, difficult-to-diagnose conditions, Beam said.
These patients, he added, are "groping for information." "I do think ChatGPT could be a good companion in the diagnostic adventure. It reads almost the entire internet. It probably doesn't have the same blind spots as a human doctor."
But he said it was unlikely to replace the expertise of clinicians anytime soon. ChatGPT, for example, sometimes falsifies information when it cannot find an answer. Let's say you ask it to do research on influenza. The tool may respond to several genuine-sounding titles, and the authors it lists may even have written about influenza before, but those papers may not actually exist.
This phenomenon is called "hallucination," and "that's really problematic when we start talking about medical applications because you don't want it to just be a fabricated story," Beam said.
Dr. Jesse M. Ehrenfeld, president of the American Medical Association, the nation’s leading physician organization, told TODAY.com in a statement that the AMA “supports the deployment of high-quality, clinically proven artificial intelligence and will It is deployed responsibly, ethically, and While AI products show great promise in helping reduce physician administrative burdens and may eventually be successfully used in direct patient care, OpenAI’s ChatGPT and other generative AI products currently There are known issues and it is not bug free."
He added, "The current restrictions pose potential risks to doctors and patients and should be used with caution at this time. Artificial intelligence-generated fabrications, errors or inaccuracies could harm patients, and doctors need to be acutely aware of these risks and Adding that taking responsibility before they rely on unregulated machine learning algorithms and tools.”
"Just as we demand proof that new drugs and biologics are safe and effective, we must insist on clinical evidence of the safety and effectiveness of new AI healthcare applications," Ehrenfeld concluded.
Diagnosis and treatment
Alex was a "happy go lucky" guy who loved playing with other children. He played baseball last year but quit due to injury. Additionally, he had to give up hockey because wearing skates hurt his back and knees. However, he found a way to adapt.
“He’s very smart,” Courtney said. "He would climb up on a structure, stand on a chair and start coaching. So, he kept himself in the game."
Following his diagnosis, Alex underwent surgery for tethered cord syndrome a few weeks ago and is still recovering.
"We basically remove the rope from where it's stuck at the base of the tailbone," Gilmer said. "It releases tension."
Courtney shares their story to help others facing similar struggles.
"No one can help you connect the dots," she said. “You have to be your child’s advocate.”