Discussions By Condition: Blood conditions

Haemophilia & von Willebrands Disease Question....

Posted In: Blood conditions 1 Replies
  • Posted By: spinnerchild
  • June 20, 2009
  • 09:04 AM

My son (7 in July) suffers from Haemophilia A (7% - 10%), von Willebrands disease ( thought to be type 1) and a 3rd mutation in the A1 sector of his DNA (unknown in UK data banks) and he is treated with Biostate. All up he is considered a moderate bleeder. He has had a severe post adenoidectomy bleed, multiple knee joint bleeds (1st spontaneous) & spontaneous ear canal bleeding. His bleeding is not very frequent with his last joint bleed being 3 years ago.
He has recently been diagnosed with probable Cyclic Vomiting Syndrome and been vomiting with severe headaches for the past 3-4 weeks and has just started amitriptyline (5mg). 4 days ago he had a very sore right flank then 2 days ago he had blood in his urine. :( After an ultra sound he was cleared of any stones and showed no sign of an infection.
The Haematologist was extremely reluctant to admit it was a spontaneous bleed, (due to the fact he swore to me my son wouldn't have another spontaneous bleed again and would only bleed through an injury or surgery, I believe), but confirmed he had had an unexplained bleed into his kidney.:confused: I'm looking for another opinion please...

My questions are these;

What else could possibly cause this to happen?
Is this common for someone of his condition?
Should I expect this to happen again?
What is the chance of it being spontaneous?

Thank you for your time guys :)

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1 Replies:

  • I am a young female VWD type 1 (mild) and would like to share some information.I myself had ear canal bleeds since I was 5 years old up until I was 14, during this time I had major troubles hearing also. I have been worried about digestive and other abdominal complications and have been finding it hard determine if it is a seperate issue or whether it is related to the bleeding disorder as I have passed blood in the toilet also, and when I hit 16 also in my bowels. I also have been cleared of infections. I know that the symptom your son has is most common in VWD type 1 more than any other bleeding disorder as advised by my specialist. My abdominal bleeds arent always spontaneous and are sometimes caused by foods. A good way for me to predict if I will have any abdominal bleeding is if my mouth is bleeding also. Another general rule I know that applies to myself is if I have a bleeding joint / joint injury (I have only had 3) - I always bleed in places that the body produces mucous. Does his mouth spontaniously bleed? or from eating/brushing?I found most haemophilia specialists brush off spontaneous bleeds very often. I can see the logic in making sure it isnt anything else of course, but find they are quite stubborn at admitting these situations. I think the best way to go about it is also accepting that it is normal and take it into your life as a normal routine in regards to dealing with it. It took me years to come to terms with classifying my experiences and episodes as normal.
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