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Von Willebrand Disease (VWD) - Online Support Group

Help with child's test results from a worried mom

Hi

I am a worried mom. My child was sent for Von Willebrand testing after seeing a Pediatrician. He doesn't seem to have any symptoms of it except maybe some nose bleeds which we are able to stop within 15 to 20 minutes and except for a couple incidents that took about half an hour for it to stop. His nose bleeds happened when he was about 3 but since then he barely had it and during the last nose bleed he had (because his brother kicked him in the nose by accident) which was a month ago it stopped bleeding within 15 minutes. We got these test results back and not even sure what to make if it. I am worried sick. The ristocetin cofactor is 0.57 (normal range is 0.6-2.00 U/ml), Factor VIII is 0.56 (normal range is 0.5-1.50 U/ml) and the Von Willebrand Factor AG is 0.65 (normal range is 0.5-1.45) U/ml.

Can i get some help please.

thanks

Dear Worried Mom,

Boy, I wish I had those numbers.

I have type III vWD (acquired by immune system malfunction) and my numbers are ten to twenty or more times lower than what you report. The fact that the results are in or are close to the reference levels is good news. One could explain the low numbers by how hydrated the child was when the sample was drawn. If von Willebrands is suspected you should have your Hematologist test again and do a family heredity search to see if relatives have a history of bleeding issues. There are several genes involved with vWD and there are several distinct types of vWD as a consequence. An APTT and a PT test are often done to distinguish vWD and other coagulation issues. My APTT runs from the high thirties to more than fifty seconds.

If vWD is suspected, your test numbers should be repeated. If bleeding issues continue and APTT and PT are OK the Hematologist needs to go back to the lab and check some of the other coagulation chemicals. There are also other tests to identify which form of vWD might be creating the bleeding issues if, indeed, the bleeding is deemed unusual, by the professionals. Fifteen to twenty minutes for a nosebleed looks terrible but probably is close to normal. My bleeds last for hours and don't stop.

John the elder

Thank you very very much for your response. My son was sent for testing to rule out this condition. He has had tooth extraction and no bleeding problem (as least I think) nor does he bruise or show any symptoms at this moment. He stopped having nose bleeds for over a year. I have went to get him retested but it is going to be another brutal long wait for results. I don’t have bleeding issues and I don’t think my husband has either but he has never had any major surgery. I even have had surgery and wasn’t told of any issues in regards to bleeding.

This is out of the blue for me and I am totally worried

His platelet is Norma and his INR is normal. Everything is pretty much showing normal except for the ristocetin cofactor

All's well that ends well Apple!

Worry isn't necessary if you ask the right people the right questions. Direct your worry energy to finding the right people!

My docs love me because I go to the appointment with my questions printed out and a copy for me and him/her. I use NIH and Mayo clinic for info about my condition and I read what they say carefully. If I go to the ER, I carry their info with me so I can convince the staff I know about my disease.

Good Luck!

John the elder

I am sorry to hear this, though it is good to know that there are others that are worrying just as much as I do. My 3 year old sons test just came back and he was type 2A the doctor said and has kind of left it at that. My son also had a slightly off blood count on somethings that were not tested. I am at loss if I am doing enough to make sure that it is not something else causing this, I guess its a parents job to worry, huh? Enough about my story though. Do not worry to much. No matter what has come everything will be okay, we are mothers, we have to strength and power to take anything on. My hematologists told me a lot of people live very normal lives.