Anyone else on here that have kids diagnosed with VWD? I would like to hear your story on how they were diagnosed

My 3yr old last April woke up vomiting blood at 3 o'clock in the morning. I took him to the Blair E. Batson children's hospital in Jackson, MS. His blood pressure was so high and so was his fever. They checked inside of his stomach and saw nothing unusual. An hour after he woke from that procedure they sent us home. As soon as I got home he vomited a little more blood. The next morning he looked pale and yellow. He was running fever again. I took him back to hospital. They checked him in to stay. His blood count was very low so they gave him a blood transfusion. Nobody acted like they knew what was going on. After complaining about other symptoms of snoring and chest caving in while he slept they brought a ENT in. When they put the probes down his nose they noticed his adenoids were bleeding. They said that his adenoids were abnormally large and looked like cauliflower. They immediately took him in to surgery. They were going to remove his tonsils too BC they are abnormally large. When they went in they could cauterize the bleeding. The more they messed with the adenoids the worse the bleeding got. So they removed them. They decided on not removing the tonsils. He received another blood transfusion after the surgery. This is when they recommend him seeing a bleeding specialist. Come to find out he has Von Willebrand Disease Type II. We had my 6yr old tested for it and he also has the same VWD. So both of my little boys have VWD.

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Hi DeAnn,

What beautiful boys you have!

I know there are others here whose little ones have been diagnosed with VWD, and I think that as soon as they have a quiet moment to sit down and turn on their computers, they will be glad to respond to you.

I hope with all of my heart that there can be a cure for this just around the corner.

Wishing you all well,


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I featured Iamsmom, DeAnn. You may wish to send her a friend request.