GAINESVILLE, Florida - Play time is the best time for little Caden Buth. But while he's full of energy, Caden must be very careful how he plays.
"He was diagnosed at 4 weeks of age with severe Hemophilia A after he had his circumcision," said Caden's mother, Christina Buth.
After the procedure, mom Christina Buth says the bleeding never stopped. She took him back to the hospital.
"They didn't know what to do."
Doctors referred her to pediatric hematologist, Dr. Tung Wynn. The main treatment for hemophilia is called "Factor Replacement Therapy".
"The normal treatment for hemophilia is to provide them with the factor they are missing," explained Dr. Wynn, head of the Division of Pediatric Hematology/Oncology at the
University of Florida Health's Shand`s Children`s Hospital.
"In Caden's case, he's missing factor 8."
Caden's body developed inhibitors, making the treatment ineffective. The wrong move could cause a severe bleed, or worse, a brain bleed.
"For a parent, that is the scariest thing you can think of, is to lose your child," said Christina.
People with a mild deficiency may bleed in the case of serious trauma, while people with severe deficiency may bleed for no reason (referred to as spontaneous bleeding). Children with hemophilia may start to present these symptoms around age 2.
- blood in the urine and/or stool
- deep bruises that are sometimes large and unexplainable
- excessive bleeding or bleeding from the gums
- frequent nosebleeds
- pain in the joints, as well as tight joints
While past treatments for hemophiliacs included protection and isolation, Dr. Wynn's remedy for Caden is called bypass therapy.
"In order to get him to clot we have to activate the clotting system in an alternative pathway."
The medicine is administered through a port.
And for Caden's parents, it's a rigorous schedule.
"My husband and I, every four hours, gave Factor on around the clock basis."
Now he's taking Factor three days a week and an immune suppression drug twice a day with hopes of starting a new treatment allowing him to maintain his hemophilia for good.
TREATMENT: Treatment to prevent or stop bleeding in people with hemophilia A and B is called factor replacement therapy. This consists of an injection into the bloodstream of two different types of factor concentrates to prevent or control the bleeding. These concentrates come from human plasma or genetically engineered cell line made by DNA technology. In both cases, the factor proteins are nearly identical to the protein which the blood is lacking. After the infusion, the proteins needed for clotting are all in place. This makes a hemophiliac`s blood become normal at least for a few hours, which allows time for a clot to form at the damaged site. The replacement of the missing factors, however, is not permanent; half of the amount is removed by the body every 12-24 hours, so within 2 to 3 days there is almost nothing left. (Source: http://www.hemophilia.ca/en/bleeding-disorders/hemophilia-a-and-b/the-treatment-of-hemophilia/factor-replacement-therapy/)
If this story has impacted your life or prompted you or someone you know to seek or change treatments, please let us know by contacting Jim Mertens at firstname.lastname@example.org or Marjorie Bekaert Thomas at email@example.com.