HHT more than just a nose bleed.
Hereditary Hemorrhagic Telangiectasia (HHT) is a genetic disorder that causes malformed blood vessels and can affect multiple organs of the body. The disorder is also sometimes referred to as Osler-Weber-Rendu (OWR) after several doctors who studied HHT in the late 1800s. More than a hundred years later, HHT is still often misdiagnosed and many doctors do not understand all of its manifestations.
HHT can cause bleeding in several different organs of the body. The most commonly experienced symptom is nosebleeds - 90% of people with HHT live with recurring nosebleeds. Nosebleeds in people with HHT can vary in severity from a simple nuisance to bleeds that require blood transfusion. Other commonly affected organs are the brain, lungs, and GI tract.
There are currently no standard guidelines for the screening and treatment of lung AVMs in children. Based on the fact that some children have had complications from lung AVMs. HHT screening are every two or three years. Though oximetry will not detect mildly or moderately decreased oxygen levels, it will detect severely decreased oxygen levels. It seems to be the children who have severely decreased oxygen levels who are at risk for complications. Also, if a child is complaining of shortness of breath when exercising, or is having a hard time keeping up in sports, they should additional testing for lung AVMs depending on their age. At the age of 12, all children with HHT should have the same screening for lung AVMs recommended for adults.
Layden is schedule to go through all HHT screenings.
Look at these poor eyes.
Dad is taking Layden to the kids center.
Nana came to visit.
Layden is giving Cuddle Butts an IV
MRI
Upper and lower endoscopy, and a lot more testing.
I hate this.
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