Hi,

I don't really have anything to say about the FVL, since I really don't know much about that as I haven't even had myself genetic testing yet, they're waiting until I'm more recovered and off coumadin. But I did want to make a suggestion that you might want to take a look at the DVT group, as I know there are pretty many there who have genetic factors. A lot of us cross over between the two groups (DVT & PE) whether we've been diagnosed with both conditions or not, since treatment, etc is so much the same. The DVT is an active support group like the PE group, also with many helpful and knowledgeable people.

I haven't been here as much lately, but I did just see a couple of your posts, and I'm sorry that you have to be here, but welcome, and I hope that you can get as much help here as I have through these past several months.

Sarah

Hi Urlacher,
I found out my sister and Mum had FVL a few years ago and only took the test last year when I switched from the mini-pill (progesterone-only) to a combined one as that was the only time that FVL could have been an issue for me. Oh, and what a surprise, it was! But that's part of the story of why I am here :-)
As they grow up you can make all your children aware of the signs of DVT/PE and maybe they can decide when they want to get tested themselves, i.e. if your daughter wants to go on the pill, get pregnant or something.
If there is a history of clots on both sides of the family I'd be even more likely to suggest tests as there could be a risk that one of the children has inherited FVL from both sides...
I'm sure that if you are open with your children and discuss things you will come to the right decision together!

I think your issue/subject is just fine for this group as well. Many have PE because of an underlying hypercoagulable condition. Not all PEs are due to complications of surgery/hospitalization.

I recently responded in the APS group to the topic of testing kids. My response is simple...sure get them tested but FIRST make sure you have secured their future and the future of their "to be family". Once they have a diagnosis on record of a life threatening condition they become either uninsurable or the cost would be astronomical. Purchase a life insurance policy as if your child was 40 yrs old w/ a spouse, house payment and two children left to attend college...enough to cover the cost and replace a salary for two years.
I do speak from personal experience in this matter.
Of course we want to know if our children are at risk and they need treatment but they need a secure future in many ways.

I just wanted to add an additional note, I didn't suggest to look at the DVT group because I thought the question here was inappropriate, obviously it is, since we're people who have had clotting issues for various reasons. But there are a lot of additional people in the DVT group who haven't had PE and don't belong to this group here and they might miss this question when they too could have some really good advice to offer. In fact there is a discussion currently going on there pertaining to FVL.

I was tested for FVL when I went to the er for trouble breathing after a surgery. I had a 'severe' saddle p.e. the FVL certainly was an active participant and I didn't even know it. It is very important for your children to be tested, however unfortunately, the financial/health issue is something to be seriously considered. I know that there are independent labs out there that you DO NOT need a physicians order to have the test done. If it doesnt go thru your doctor and you don't use your insurance company...I have a sister who is doing it that way,,,

Well, if you're worried about the implications of taking a test: normally, FVL isn't 'treated' as such. So it's a question of educating yourself about the signs of DVT and taking precautions to avoid it. No need for a test.
With a family history of DVT they will usually treat you proactively in hospital with heparin and stockings anyway...
It's your daughter who will probably need a test if she wants to start a family as added to DVTs, FVL carries a high risk of miscarriage and this risk can be treated.

Your relationship with them as grown adults can potentially go on much longer than your relationship with them as children. If they encounter any problems from knowing they are FVL positive then they may resent being tested before their age of consent. Obviously be on the lookout for clot issues at any age, but there are such weighty adult-level implications that maybe the test decision should be made by the individual, by their own volition, as an adult.

I'm struggling with whether or not to do the coagulation studies myself. I'm seriously considering waiting until I decide to have kids and then doing the testing. I'd like to continue to blame my clot on birth control as long as possible. Knowing isn't going to change anything at the present except make you, and maybe them, more concerned and cautious about their health. As long as you and they are aware of signs and symptoms and you make sure to communicate your history of FVL at any medical events in their life (surgery, hospitalization, etc.). I'd leave the decision up to them when they're ready to make it.