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Von Willebrand Disease (VWD) - Online Support Group

My 3 year old son just got diagnosed with VWD

Hello everyone, my three year old son got diagnosed with the vwd type 2a and I am at a loss of words and emotion. It all start about 9 months ago when my son started getting random bloody noses that would last for about 2 to 2.5 hours at a time. I had to actually take him to the hospital one night to try and stop the bleeding. He has only had 3 bloody noses and if he gets a cut anywhere else he has no issues. My son will also be running around and playing, randomly stopping and having to vomit. His face seems very swollen some days and others he is okay. I noticed all of this before even getting him tested.

One month he had 2 ear infections and at the second doctors visit I asked her about his bloody noses. She suggested that we get a blood test done. On this blood tests. His white blood cells were slightly high, his platelet count was slightly high, his MCH and MCHC was slightly low, his neutrophils count was lightly high and his lymphocytes were slightly high. On this tests his VWF was 22%. I was absolutely terrified.

Once getting my son into a hematologist, they did another test. During the time we waited for the results my doctor called me and told me he definitely had the VWD, he told me we were waiting on which type he was though he suspected that it was type 1 because there was no symptoms throughout the family or history of the disease. Well my sons tests results came back and the doctor said he was thrown off with the test results showing that he was 2a. Well I logged into my my chart account and read over the results and what the lab noted on them.

VON WILLBRANDE FACTOR MULTIMER
*where it is supposed to show his value it says…“Plasma von Willebrand factor multimers are abnormally distributed with decreased higher molecular weight
multimers, consistent with congenital type 2 von Willebrand’s disease or acquired von Willebrand’s syndrome”

VON WILLBRANDE FACTOR
* about 3 months ago this was 22%. He has not had a nose bleed at all and it has dropped to a 15%

His other 2 tests fell within the range or a number or so outside of it.

I am a nervous wreck and do not know if I am doing enough pushing to make sure that my son only has the vwd and not an acquired type. When I mention it do the hematologists he seems very closed minded on the idea. I know that it is rare, though for some reason I wish they would do another blood count tests and compare numbers; making sure they did not drop or rise more. I have no family history of the vwd and we are a very active family. After seeing the notes that the lab wrote I am very worried and wondering if I should try and get a second opinion on the tests? any information or experiences would be a help I am at a loss for words and want to make sure that I am getting my son all the help he needs and if it does happen to be something else causing his vwd I was to be able to execute it as soon as possible. Anything would help.

Thank you.

Hi @cc_raider and welcome to this group. I’m sorry that you’re dealing with this new diagnosis with your little one.

You mentioned that the hematologist seemed very closed off to one of your questions. I would encourage you to seek out a second opinion on this. You need to be comfortable in speaking freely with the doctor and being able to ask questions.

Sharon