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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