My 4yr. old daughter was just diagnosed w/ vonWillbrand's disease. Anyone out there have any info or advice ?

Question

vonWillebrand's disease is a bleeding disorder.

Answer 1

Von Willebrand disease is the most common hereditary bleeding disorder caused by a deficiency of "von Willebrand" factor in the blood. Von Willebrand factor helps platelets to clump together and stick to the blood vessel wall, which is necessary for normal blood clotting.

VonWillebrand disease affects both men and women, but most cases are mild. Bleeding may occur after surgery or when you have a tooth pulled. Aspirin and other nonsteroidal anti-inflammatory drugs (NSAIDs) can make this condition worse.

A family history of a bleeding disorder is the primary risk factor. Medications such as desamino-8-arginine vasopressin (DDAVP) can be given to raise the levels of von Willebrand factor, which will reduce the tendency toward bleeding. Blood plasma or certain factor VIII preparations may also be used to decrease bleeding.

Some types of von Willebrand disease do not respond to DDAVP. Tests should be done to determine a patient's specific type of von Willebrand disease, before trauma or surgery occurs. A trial of DDAVP can be done prior to surgery to test whether von Willebrand factor levels increase.

Women who have this condition generally do not experience excessive bleeding during childbirth and since this disease is inherited, genetic counseling may be recommended for parents.

Complications include post-operative hemorrhage (bleeding). Do not allow your child to take nonsteroidal anti-inflammatory drugs (NSAIDs) such as aspirin or ibuprofen without talking to your health care provider.

Otherwise, they can provide a course of treatment. Just be sure your child avoids potential cuts or abrasions as much as possible and be sure you or your family notify health care providers about your condition if there's an emergency or other treatment that may involve and injection, drawing blood or surgery

Answer 2

Vitamin K will help shorten the blood clotting time. Consult with your Dr. about proper dosage. Or consider adding a K rich diet.

Keep away from things that thin the blood, such as aspirin and motrin.

Answer 3

vonWillibrand's often runs in families. Do you have any other affected family members? Some people do not have any problems or take any factor products except for surgery or dental procedures. You may be able to find a support group at the following web page:
www.shemophilia.org/community/support.html

Answer 4

Try this:

http://en.wikipedia.org/wiki/Von_Willebrand_disease

Don't worry - fairly common. No reason you won't have grandchildren one day!