The beginning of the end of the journey came earlier this
year, when Courtney finally got some answers from an unlikely source,
ChatGPT. The frustrated mom made an account and shared with the
artificial intelligence platform everything she knew about her son's
symptoms and all the information she could gather from his MRIs.
“We
saw so many doctors. We ended up in the ER at one point. I kept
pushing,” she says. “I really spent the night on the (computer) … going
through all these things."
So, when ChatGPT suggested a diagnosis of tethered cord syndrome, "it made a lot of sense," she recalls.
Pain, grinding teeth, dragging leg
When
Alex began chewing on things, his parents wondered if his molars were
coming in and causing pain. As it continued, they thought he had a
cavity.
“Our sweet personality — for the most part
— (child) is dissolving into this tantrum-ing crazy person that didn’t
exist the rest of the time,” Courtney recalls.
The
dentist “ruled everything out” but thought maybe Alex was grinding his
teeth and believed an orthodontist specializing in airway obstruction
could help. Airway obstructions impact a child’s sleep and could explain
why he seemed so exhausted and moody, the dentist thought. The
orthodontist found that Alex’s palate was too small for his mouth and
teeth, which made it tougher for him to breathe at night. She placed an
expander in Alex’s palate, and it seemed like things were improving.
“Everything was better for a little bit,” Courtney says. “We thought we were in the home stretch.”
But
then she noticed Alex had stopped growing taller, so they visited the
pediatrician, who thought the pandemic was negatively affecting his
development. Courtney didn’t agree, but she still brought her son back
in early 2021 for a checkup.
"He'd grown a little bit," she says.
The
pediatrician then referred Alex to physical therapy because he seemed
to have some imbalances between his left and right sides.
“He would lead with his right foot and just bring his left foot along for the ride,” Courtney says.
But
before starting physical therapy, Alex had already been experiencing
severe headaches that were only getting worse. He visited a neurologist,
who said Alex had migraines. The boy also struggled with exhaustion, so
he was taken to an ear, nose and throat doctor to see if he was having
sleep problems due to his sinus cavities or airway.
No
matter how many doctors the family saw, the specialists would only
address their individual areas of expertise, Courtney says.
“Nobody’s
willing to solve for the greater problem,” she adds. “Nobody will even
give you a clue about what the diagnosis could be.”
Next,
a physical therapist thought that Alex could have something called
Chiari malformation, a congenital condition that causes abnormalities in
the brain where the skull meets the spine, according to the American Association of Neurological Surgeons.
Courtney began researching it, and they visited more doctors — a new
pediatrician, a pediatric internist, an adult internist and a
musculoskeletal doctor — but again reached a dead end.
In
total, they visited 17 different doctors over three years. But Alex
still had no diagnosis that explained all his symptoms. An exhausted and
frustrated Courtney signed up for ChatGPT and began entering his
medical information, hoping to find a diagnosis.
“I went
line by line of everything that was in his (MRI notes) and plugged it
into ChatGPT,” she says. “I put the note in there about ... how he
wouldn’t sit crisscross applesauce. To me, that was a huge trigger
(that) a structural thing could be wrong.”
She
eventually found tethered cord syndrome and joined a Facebook group for
families of children with it. Their stories sounded like Alex's. She
scheduled an appointment with a new neurosurgeon and told her she
suspected Alex had tethered cord syndrome. The doctor looked at his MRI
images and knew exactly what was wrong with Alex.
“She said point blank, ‘Here’s occulta spina bifida, and here’s where the spine is tethered,” Courtney says.
Tethered
cord syndrome occurs when the tissue in the spinal cord forms
attachments that limit movement of the spinal cord, causing it to
stretch abnormally, according to the American Association of Neurological Surgeons.
The condition is closely associated with spina bifida, a birth defect
where part of the spinal cord doesn’t develop fully and some of the
spinal cord and nerves are 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 bump on a spike of bones. It could just
be too much fat at the end of the spinal cord,” Dr. Holly Gilmer, a
pediatric neurosurgeon at the Michigan Head & Spine Institute, who
treated Alex, tells TODAY.com. "The abnormality can’t elongate ... and
it pulls.”
In many children with spina bifida, there’s a
visible opening in the child’s back. But the type Alex had is closed
and considered “hidden,” also known as spina bifida occulta, according to the U.S. Centers for Disease Control and Prevention.
Website: neurology.pencis.com
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