Middle schooler Gianna Pennell is making up for lost time.
Diagnosed with Complex Regional Pain Syndrome (CRPS) in January of 2018, she was unable to attend classes at Norton Middle School during her entire 6th grade year. The pain was so great, she couldn’t wear shoes. Her parents, James Pennell and Amanda Duskey, were unable to hug or hold her to offer comfort as the slightest touch was too painful.
“We tried medication, physical therapy, occupational therapy and water therapy, but she was still in a lot of pain,” Amanda said.
Thanks to ketamine infusions, an innovative treatment now available in Akron Children’s Pain Center, Gianna is mostly pain-free and back at school. She’s learning how to play volleyball and plans to try out when she starts 8th grade next fall.
Complex Regional Pain Syndrome is a painful, debilitating neurological condition that is difficult to treat. The neurons in the body have an increased sensitivity in how they perceive pain or react to normal contact.
“CRPS can appear as a profound response to a physical injury or surgical procedure,” said Dr. Tarun Bhalla, chair of anesthesiology and pain medicine at Akron Children’s. “Symptoms include pain in the affected extremity, pain due to a stimulus that does not normally cause pain, as well as increased sensitivity to pain.
Last February, Gianna was referred to the Pain Center, where her parents were relieved to discover that ketamine infusions were an option for her. Ketamine is an anesthetic agent that is administered by IV to break the pain cycle and reorganize the neurons to significantly reduce or eliminate pain.
Amanda had done a lot of research on CRPS and knew that ketamine is a relatively new treatment that was previously only used in adults, so it’s not yet widely available for children. Amanda found a clinic in Florida that offered ketamine infusions for adults and children, but there is a long wait list. The clinic does not accept insurance and treatment would cost the family thousands of dollars.
“Gianna has been a long-standing patient of mine with chronic CRPS. We tried multiple treatment modalities, which were somewhat helpful in relieving her pain but not complete. It was frustrating to her team that she was not completely healing,” said Dr. Riemenschneider. “After I had a family member experience the positive effects of an adult ketamine clinic, I was on a mission to open a ketamine clinic for pediatric patients at Akron Children’s. We chose Gianna to be the first patient to receive an infusion and halfway through her treatment her father came to me and said, ‘It’s unbelievable! Gianna is moving her legs. She hasn’t moved like that in years.’ Needless to say we were all ecstatic.”
Gianna continues to be pain-free and has had 3 infusion treatments. Her mom agrees that ketamine seems to be the answer.
“She was at a constant pain level of 5, but now her pain is at 0 to 2,” said Amanda. “The only side effect has been some nausea immediately after the infusions.”
According to Dr. Bhalla, ketamine infusions have generally been seen as a last resort, after patients have been referred to psychology, physical therapy and occupational therapy, and given non-opioid pain medications.
“This relatively new, cutting-edge treatment for adults is showing promise in pediatrics and may be more beneficial earlier in a treatment course,” Dr. Bhalla said.
Despite the chronic pain she once endured and the missed school days, Gianna still managed to get straight As.
“We met her teachers at the library to get school assignments, so she could keep her grades up,” James said.
Activities that many of us take for granted are now possible again, such as walking long distances, taking a shower without difficulty, and sleeping comfortably. Gianna has also returned to tap and jazz dance.
Most importantly, Amanda and James feel like they have their daughter back.
“When Gianna was in constant pain, she was short-tempered,” said Amanda. “It’s hard to see your child hurting and not be able to do anything.”