My 4 year old son was dx'd w/ VW type I after an acute case of ITP which has since resolved. I am the carrier and also tested positive last month. I have not had any bleeding issues other than heavy cycles. He was scheduled for a dental cleaning and filling and the dentist refused to touch him. Our regular hemo is on leave for 6 months and talked about the DDAVP challenge but no sense of urgency. Said we would need it for surgery or tooth extraction. The interim hemo now says that my son should take Amicar before and after the cleaning and have the challenge done asap and administer the DDAVP prior to filling. Any input is appreciated. He is so traumatized by needles and IV's after the ITP that I can barely imagine what how he would react! His levels for Factor VIII, VW antigen and activity are .51-.52.

Thanks in advance.

Hello,

I have VonWillebrand's disease. I am no expert but I can tell you my experience having a tooth extraction. I take Stimate prophlaxis--every other day. I had my tooth extracted and went home. I experienced A LOT of bleeding. I started with more Stimate. The problem with teeth bleeding is that the clot is broken down too fast by the saliva. I then started taking Amicar every four hours. Eventually after a couple days the bleeding stopped.

My 5 yr old son was diagnosed with vonWillenbrand's Typy 1 also. We are going for the stimate challenge tomorrow. Good thing for insurance. I picked up the stimate tonight, and it cost $552.65, I only had to pay my co-pay of $3.00. That is outrageous for such a small bottle of nose spray. Good luck with your son. We needed to get the challenge done asap, because he need his tonsils taken out soon.

Hi, 2 years ago after going to the gyno for heavy bleeding I was also diagnosed with MILD von williebrands.
I found it to be a real pain, being diagnosed that is, as apart from heavy periods I didn't have any other problems with bleeding or bruising.
I have had a few surgical procedures since then and would be given the ddavp 1 hour before the surgery, everything went ok.
I had a tooth taken out and did not tell them about the von willibrands, this was a massive back tooth that took 2 dentists nearly 2 hours to get out. I was fine no extra bleeding.
Six weeks ago I had a hysterectomy to put an end to the heavy bleeding.
I was given the ddavp 1 hour before and I bled out in surgery, had to be given 2 units of blood and then extra lots of ddavp and another synthetic blood clotter which made me retain fluid and swell up. I ended up being in hospital for 10 days rather than the 4 I had espected to stay.
Stupid me though had been taking disprin (asprin) for headaches, I suffer from migraines and found that disprin was helping. This thins the blood and mucks around with the platelets apparently so may have caused the extra bleed. Don't take asprin if you have von willibrands was my lesson. :eek:

I have severe vWD and do not have problems with teeth cleanings. I don't have tartar or gum disease, so that helps...less scraping to do. I have never had a need to take any meds before a teeth cleaning. If he's had surgeries w/o a problem, then it seems he might not have a problem with teeth cleanings. (Dental extractions are a different story.)

I have had half a dozen dentists refuse to treat me too, when they hear I have the disease. I shopped around until I found someone who would. Good luck.

hi i have two boys with sever hemophilia and recently had some problems with a tonsil bleed we did the factor replacement and because of the saliva and the fact that his tovsils are so close to the surface everytime he ate something like chips it began to rebleed so our hemotoogist prescribed amicar and it worked wonjderfully i would definatly recommend it