"It's the most scared I've been as a pediatrician."
This is how Dr. Christina Sherrod, Shannon Clinic pediatrician, felt when she walked into the exam room and saw five-month-old Cory Tounget.
The evening before, after bath time, Samantha and Matt Tounget noticed their son wouldn't bear any weight on his legs.
"His legs were just floppy," Samantha recalls. "He wasn't acting sick or like he hurt anywhere. He wasn't standing on his own yet, but normally when we stood him up he would lock his knees. That wasn't happening, but it was the only thing we saw so we dismissed it at the time because there were no other symptoms."
The next morning, Cory's legs were the same. His parents took him into day care, but called day care often that morning to check on Cory. Around lunchtime they got the news that he was getting weaker.
"At that point, he couldn't hold his bottle," Matt says. "We put him in the car seat and he slouched to the side. We went straight to Dr. Sherrod's office."
At his four-month checkup, Cory was a healthy infant. He went through common newborn problems, such as reflux and breastfeeding issues, but he and his parents were working through them and enjoying their time as a new family of three.
"He was laughing, holding his head up, making noises, eating more, rolling over—he was a normal baby," Dr. Sherrod says. "Then a month later, my nurse flagged me down and mentioned Cory Tounget's mom had called and told me he wasn't bearing weight on his legs."
To Dr. Sherrod, that was a big red flag.
"I was hoping it was an exaggeration, but I was immediately concerned when I walked into the exam room. He was clearly not holding his head up well, his legs were only moving in response to pain. Samantha told me he hadn't been eating well the past few days, he had been fussier and that the noticeable loss of milestones had happened in the last 24 hours. I have to admit, it scared me because when a five-month-old has symptoms like this, it's usually not a good diagnosis. There are a couple of very serious illnesses that can lead to death in an infant very quickly. It's pretty much your worst nightmare as a parent."
Cory was immediately admitted to the hospital and a barrage of tests began to figure out what was causing his sudden lethargy.
First, a CT scan was ordered to check Cory's brain and rule out a tumor or bleeding. The results came back normal along with x-rays of his spine, neck and all of his bones. The next step was to arrange some complicated tests, including a lumbar puncture and MRI, which require anesthesia in a five-month-old because they have to be still.
"Dr. Sherrod had been talking with the neurologist at Cook Children's in Fort Worth the entire time Cory was in the hospital," Samantha recalls. "They tested him for botulism and Guillain-Barré, things that even as a nurse I couldn't fathom happening to him. It was terrifying because it just progressed so quickly. We were pretty desperate, but we never felt like anyone gave up."
Cory was also placed on monitors because infants experiencing paralysis can have trouble breathing, eating and staying hydrated. The healthcare team wanted to make sure that didn't happen. That night, the results of the lumbar puncture confirmed something very serious was going on in his brain and spinal cord.
"There's a genetic disease called spinal muscle atrophy that causes symptoms like this," Dr. Sherrod says. "This disease has no cure and leads to death at a very young age. I was very worried and afraid I was going to have to tell his parents he was going to die. One of your worst fears as a pediatrician is having cases like this, and I really thought that's where it was going."
Luckily, the results of Cory's MRI led to a different diagnosis.
"We found out from the MRI that Cory had transverse myelitis, still a very serious, but treatable condition," Dr. Sherrod says. "I was incredibly relieved and thankful."
After three days at Shannon, Cory was immediately flown to Cook Children's in Fort Worth, where he spent the next three weeks in the care of the pediatric neurology team.
"Dr. Sherrod was very prompt in getting us where we needed to go," Samantha says. "I had heard very little about transverse myelitis. Cory had inflammation on his spinal cord that was causing compression on the cord due to swelling. It was progressing up the spinal cord, moving from his legs up and there was a concern it might affect his breathing. We were placed in the pediatric ICU at Cook's so we were prepared if something happened with his respiratory system."
For the next five days, Cory was placed on very high doses of steroids that worked to stop the inflammation. He didn't get better or worse. The steroids stopped the inflammation, but he was still weak. He was then given IVIG (intravenous immunoglobulin) treatments, which work to trick the antibodies, for the next seven days.
"We were in muddy waters because they hadn't treated someone as young as Cory with this disease," Samantha says. "It was scary because he couldn't tell us if he was feeling better or worse, so we were making decisions without any real patient influence."
The cause of transverse myelitis is unknown. It is an autoimmune disease which means the immune system attacks your own body instead of foreign objects like a virus or bacteria. It can happen in kids and adults, but it's very rare. The latest statistics say there are only about 1,400 new cases a year in the U.S. About 30 percent of those happen in kids younger than 18, and usually between the ages of 10 and 18, which makes Cory's case even more rare.
A central line was placed to make the treatment process smoother for Cory and his medical team. After the course of treatments, the Toungets were sent home.
"They told us when we left Cook's that his condition may not improve," Matt says. "We came home and gave him every opportunity to get better and just hoped for the best. He took steroids for the next six weeks and was doing physical therapy, but we didn't really see any progress for a while."
But, on Super Bowl Sunday, the Tounget family celebrated something far more important than a football victory—Cory moved his leg for the first time.
"It was subtle, but we could tell it was intentional," Matt says.
"It was very emotional when he took those first steps," Samantha recalls. "A year ago, we were looking at the prospect of having a child with a permanent physical disability and now, he is crazy and everywhere and into everything. It's amazing."
The Tounget family is back to enjoying life with a happy, healthy and active little boy. Cory's neurologist has signed off on his progress, and he continues to do physical therapy. Other than the initial trip to Cook's, Cory has been able to receive the majority of his treatment at home in San Angelo. They are grateful for the support they received from CMN.
"It's hard to travel and be away from home and your support system for medical treatment, so being able to raise money to keep kids here for issues like this is monumental," they say. "Cory is a miracle to us because of how far he has come in such a short time. From the disabled state he was in to, in a few years, not even being able to tell anything was ever wrong—that's pretty special."