Geeziz Terri.........Well, anyway, here's one I have some minor knowledge of. As you have probably found from your reading, this is yet another clotting disorder. I had no idea how many there were until Karen became ill with the pulmonary embolisms last November. Sister Connie has Factor V, a somewhat recent discovery, also hereditary. They tested Karen for over 70 known clotting disorders and found nothing. The best thing here is that you KNOW the possibility exists and can take the appropriate steps in getting the kids checked. Treatment for almost all clotting problems gets down to the same thing......Heparin and/or Coumadin and regular PT/INR checks.

I was surprised at the time that there are not a lot of Docs who specialize in this until I realized that this is more of a research field and even I could do the treatment end. You didn't say what the man has that he is so ill, but I imagine we're talking the same or a similar situation to Karen. Karen had PE's taking up almost 70% of her lungs and we are fortunate (as he may not be) that none of these went any further which happens in most cases where the clotting is undiagnosed for a long period. Throwing a clot to the heart or brain is the worst obviously.

Maintaining an INR at about 3.0 through Coumadin is the long term treatment at this time for almost all the clotting problems including Protein C deficiency although other treatments are prescribed at times for specific situations. Vitamin K intake should be kept within moderation as it makes the INR levels easier to maintain with Coumadin.

Living with the problem becomes a pain in the ass at times because there is such limited clotting that you worry about every cut and bruise and its important to wear an ID tag to notify emergency personnel that the person is on a blood thinner. It sure beats the alternatives though. Have the kids checked and then follow the Docs advise. They may have no problem at all, but if they do, the really important thing here is to KNOW and then treat accordingly. There are a lot worse things than living with Coumadin. Properly diagnosed in good time, there should be no complications such as have occurred with your "ex-brother-in-law." Or Karen.....We were just extremely lucky that nothing went further. Although her lung damage is significant, had we had any idea of the problem beforehand, such as you do now, nothing would have happened to her at all.

Spaw