bleeding disorders

I am being tested for von Willenbrand's disease or a platelet dysfunction. I thought I had no history of any bleeding disorders but recently thought of my mothers older sister who died in her twenties (about 1940's) She died of a brain hemorrhage. Could this have been a result of undetected von Willebrand's?

Thank you for logging onto our web site. Typically patients with von

Willebrand's disease or platelet function abnormalities do not have cerebral

bleeding such as your family member. Patients with very low levels of Factor

VIII as can occur with some forms of severe von Willebrand's disease, may

have bleeding complications that are more like hemophiliacs and include

serious bleeding including cerebral hemorrhage. There are also several other

factors that may contribute to cerebral hemorrhage that are more likely, such

as abnormal blood vessel formation called atrial venous malformation,

aneurysms, and trauma. These have nothing to do with a familial bleeding

tendency.

I was diagnosed with a very mild form of von Willebrand's disease approximately 3 years ago when I was pregnant with my second son. Since then I had a C-Section with some bleeding problems during the procedure and afterwards. I was treated with Premarin which seemed to help. I have not had any problems other than a very heavy monthly period since my C-Section. Until now, of course. On 2/6/02 I had my tubes tied and an endometrial ablation. I had some problems bleeding afterwards because of my activity but I eventually stopped, until 2 days ago. Now I am passing very large clots (child's fist size), and I have continuous bleeding. Bright red. I am going through a super plus tampon and a maxi pad every hour to 90 mins. I have called my doctor twice and he told me to keep my feet up and gave me a RX for medroxyprogesterone 10mg tabs, to be taken 2 pills once a day. My concern is that I am feeling very week and have not had any bloodwork done yet. I'm hot and flushed, sweaty and extremely dizzy when I am up.

In our experience, every uterine ablation that we have done in a patient with

von Willebrand's has failed. We are in the process of recording this

information and will hope to publish it. It would be nice to be able to

include your information in the article if there are details that you can

make available to us.

As for the bleeding, there are several options that may help. THe first is

Stimate nasal spray. Second, which may be used with the first, is Amicar.

THese work well to decrease bleeding complications with von Willebrand's

disease. (see bleeding disorders section for more information) If these do

not work, then Provera, progesterone may stop the bleeding. I would

recommend that a blood count and iron stores (ferritin) be obtained to make

sure that the weakness is not due to anemia that should be treated.

My 8-year old daughter has just been diagnosed with type 1 von Willebrands. She suffers from frequent bloody noses, although they are not particularly heavy or long in duration. Now I am told to administer a spray each time she has a bloody nose and each time she bumps her head. She is a very active child, fearless in fact, so she bumps her head quite often. She always wears a helmet biking and roller blading, skiing and snowboarding. She is an avid ice skater, jumps and all. Do I have to curtail her activities? Do I have to worry about brain bleeding everytime she bumps head with another girl when playing tag? Also I am told that the spray can adversely affect her eleoctrolytes, so I wonder if the treatment is really necessary?
CCH in CT

The primary goal of treating persons with bleeding disorders is to improve their lives. This includes helping them to live NORMALLY for longer. Therefore, we encourage all our children to continue active lives. This includes sports, however we usually try to encourage them to NOT participate in contact sports such as hockey that are more likely to result in injury.

Persons with mild von Willebrand's disease do not usually suffer from head bleeds unless they have very low Factor VIII levels. Therefore, with minor bumps we would usually only watch them closely as you would any child. Recurrent nose bleeds are not life threatening, but may result in anemia and interfere with activity. Therefore, for recurrent nose bleeds we recommend the use of aminocaproic acid. For others, we use the nose spray you refer to. Usually it is just a matter of learning to live with this disorder to maintain health without interfering with normal life.

DDAVP nose spray if used more than three days in a row or in infants and babies may result in lowering of the sodium level in the blood. This usually does not occur, but the medication should not be overused.

Send mail to rshtcn@aol.com with questions or comments about this web site. Last modified: May 17, 2010

Send mail to rshtcn@aol.com with questions or comments about this web site.
Last modified: May 17, 2010