Discussions By Condition: Medical Stories

Haemophilia & von Willebrands Disease Question....

Posted In: Medical Stories 0 Replies
  • Posted By: spinnerchild
  • June 21, 2009
  • 05:15 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 :)

Reply Flag this Discussion
Thanks! A moderator will review your post and it will be live within the next 24 hours.