Von Willebrand disease

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Von Willebrand Disease Type 1 Braxton has been officially diagnosed today, December 27, 2013 with Von Willebrand disease Type I (This is the most common and mildest form of Von Willebrand disease. Levels of Von Willebrand factor are lower than normal, and levels of factor VIII may also be reduced).  Sounds horrible doesn't it? To put it simply Braxton's blood is not sticky enough to clot.

Von Willebrand Disease Type 1 Braxton has been officially diagnosed today, December 27, 2013 with Von Willebrand disease Type I (This is the most common and mildest form of Von Willebrand disease. Levels of Von Willebrand factor are lower than normal, and levels of factor VIII may also be reduced). Sounds horrible doesn't it? To put it simply Braxton’s blood is not sticky enough to clot.

Braxton has been having nosebleeds that could last up to an hour since he was very little. They have done numerous, way to many to count, cauterization’s on both sides of his nose. All which failed within a few months, sometimes within a couple weeks. Nobody has really helped Dr Kelly Meyer who referred us to see Doctor Diamond through their specialty clinic in Appleton at St. Elizabeth’s hospital. Today, December 27, 2013 we had to go down to American Family Children’s Hospital for further evaluation. Their they gave Braxton a nasal medication called, Stimate. After that was sprayed in each nostril we had to wait an hour before they could draw blood to see if the medicine worked or not. I just got the lab results on December 30, 2013 and the medication, Stimate works!!! So happy to know have something to help get his Von Willebrand factors up. He can only have one day per twenty four hours and one dose up to 48 hours, then we have to wait three days before we can give him another dose. It’s an as needed medication but we are hoping it will help get his nosebleeds under ten minutes.

I bet you are wondering what Stimate is and what it does? Stimate is the brand name of a highly concentrated form of intranasal DDAVP or desmopressin. This is a man-made form of vasopressin. Vasopressin is a hormone, made by the body. The body will release its stores of Factor VIII and Von Willebrand Factor. These helps the blood clot. Vasonpressin also causes the body to retain water.