Stomach pain in kids is common. But when nine-year-old Nora Fox’s belly aches started after a bout of pneumonia, her mom Amber knew Nora’s pain wasn’t typical.
“The stomachaches didn’t get better, and they didn’t go away,” she said.
Nora’s pain became so severe she stopped eating and would crawl around on the floor, unable to stand.
Looking for answers and a way to relieve her daughter’s pain, Amber took Nora to a series of doctors in Pennsylvania, where the family lives. Nora was diagnosed with celiac disease, chronic constipation and median arcuate ligament syndrome (MALS). MALS happens when the median acute ligament, a band of tissue in the chest, pushes on the artery that sends blood to the upper abdomen. This can cause stomach pain.
Nora tried several treatments and medications including a surgery with no relief, and after losing a significant amount of weight, had a feeding tube inserted.
“It was a nightmare watching her crawl around in pain,” Amber said. “I cried a lot. There’s this tiny person going through all this pain and there’s nothing you can do to make it go away.”
Amber attempted to work from home while caring for Nora but needed to take medical leave from her job to care for her.
After exhausting their options, Amber and Nora came to Ohio looking for a second opinion and found Akron Children’s.
“Dr. Pasquarella was really the first person who gave me hope,” Amber said. “I thought ‘Here is someone who cares.’”
Nora sees several departments including gastroenterology and the Pain Center at Akron Children’s. She was also diagnosed with gastroparesis, a condition that causes slow stomach emptying and abdominal pain.
Dr. Bradley Riemenschneider, pediatric anesthesiologist and one of Nora’s doctors at the Pain Center, suggested she try ketamine to relieve her abdominal pain.
Ketamine is a general anesthetic commonly used to put patients to sleep before surgery. After the FDA approved its use as a general anesthetic, physicians noticed smaller doses of the drug had positive effects on chronic pain.
In addition to chronic pain, ketamine can be used to treat fibromyalgia, complex regional pain syndrome (CRPS) and chronic abdominal pain. Ketamine is also used to treat certain mental health conditions like depression and suicidal thoughts.
“Dr. Riemenschneider is fantastic,” Amber said. “He looked into using ketamine for this and it’s been amazing. The bulk of her pain went away with the first treatment. She no longer crawls through the house in pain.”
Nora receives ketamine infusions every three months and can receive more if she has breakthrough pain. She also gets what she calls “belly rubs” from a massage therapist at the Pain Center to work on her scar tissue and help improve gastrointestinal motility.
“I love getting my belly and back rubs,” said Nora. “I like Akron the best. It’s the best hospital.”
The treatments she’s received at Akron Children’s have helped Nora get back to doing what she loves best: Checking out bugs and reading books about animals (her favorites are puppies, kittens, giraffes, and unicorns.)
“The atmosphere and approach are different,” Amber said of the collaboration between departments at Akron Children’s. “You can tell the teams of doctors and nurses really care about your child and the quality of life they have. With everything she has going on, the departments have been phenomenal working together.”
To make an appointment at the Pain Center at Akron Children’s, call 330-543-8503.