Like most 4-year-olds, Caden Buth is a happy boy with boundless energy. But a hemophilia A diagnosis at 4 weeks old led to many bumps in the road that have, at times, kept him from the activities he loves. The blood clotting disorder causes people to bleed longer than others, sometimes from even a minor cut.“The doctors diagnosed Caden with the disease after he had
“The doctors diagnosed Caden with the disease after he had a circumcision,” said Christina Buth, Caden’s mom. “We were really lucky that the physician on call during the circumcision was Tung Wynn, M.D., a UF College of Medicine pediatric hematologist. He has been treating Caden ever since, and we could not be more grateful.”
The first course of treatment for Caden was factor replacement therapy — an infusion of the low or missing clotting Factor VIII concentrates to prevent or control bleeding. Unfortunately, Caden’s body began producing neutralizing antibodies, or inhibitors, to the factor infusions, making treatment ineffective.
“Inhibitors are one of the most serious complications that a hemophilia patient can face,” Wynn said. “They can make the treatment of hemophilia very challenging when we can no longer use most widely available factor replacement therapies.”
Caden’s disorder has caused bleeding from various parts of his body, including his knee, mouth and ribs. He will soon begin taking rapamycin to suppress his immune system and reduce his inhibitors. Then, Buth hopes her son can begin immune tolerance treatment to eliminate his inhibitors for good.
“I know it doesn’t sound like it, but we consider ourselves very lucky,” Christina said. “Caden does not bleed as much as someone with severe hemophilia A should, especially someone who is not responding to treatment. Caden continues to be a fun-loving boy, and we fight for him every day.”
Ann Dove, R.N., UF Health Shands Children’s Hospital’s hemophilia nurse coordinator, has been involved with Caden’s case from the beginning. She says he’s a great kid from a supportive family that helps him understand what he’s going through.
“Caden’s parents are not only advocates for their son but for the entire hemophilia community,” Dove said. “I think Caden is aware and knowledgeable that he has to have factor replacement therapy and our care teams are trying to get him healthy enough for that by using rapamycin and then immune tolerance treatment to eliminate his inhibitors. Our goal is also to inform him about his own disease process so he can grow into an adult and live a normal life.”
Wynn added, “Caden and his family embody the many challenges that we are faced with in the treatment of hemophilia and the hurdles we try to overcome to assure that his childhood is as normal as any other child’s. It is a gift to be able to see Caden run, dance and play.”