Factor v and children

Posted in General Question about 1 year ago, 13 replies

I have two daughters ages 6 and 7, and I have factor v. Should I have them tested for the disease now?
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if i where you i would that way maybe they cant help it from not progressing
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I also have Factor V Leiden. I was diagnosed in 1998 after having several mini strokes and TSAs I also had a pulmonary embolism. I got through it all and in 2007 became a mother to a beautiful little girl. Of course the first thing I wanted done was for her to be tested for factor V leiden. The pediatrician did some research and informed me that the mutation doesn't usually occur until puberty and that it's normally passed on when the father is the carrier. So when my daughter starts showing signs of puberty I will have her tested and definately before ever taking any kind of birth control pills.
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Yes!! My father is the one who passed down the gene to my sister and I (we are in our 20s). I had a DVT and bilateral PEs a year ago that almost killed me. My sister got tested and she was (hopefully) able to prevent a clot by being removed from birth control pills (which we were both on).

Please get your little girls tested! :)
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Definatly! Better not to take chances!
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Just wondering if Factor V has anything to do with arthrits and or joint pain???
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I would wait to your girls were teenagers before they start birth control. If you test them at an early age like 6 or 7 and find out they do have factor V then the insurance companys will possibly raise the insurance because they are a high risk. I have Factor V Leiden and use an IUD for birth control. My doctor advised me that it would be best since it did not have all the hormones that the other birth controls have. Hope this helps! I was 19 when I found out I had Factor V. I played college basketball and ended up having knee surgery. During recovery I ended up having a DVT. Doctors said it was common due to surgery. A year later I had another DVT. My doctor was worried because I was active and too young to be getting clots. So they tested me and I was positive for leiden.
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Sorry I meant to say wait for your girls to be teenagers before you test them and before you put them on birth control.
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YES!! By all means have your girls tested!! As previously mentioned, if they ever use birth control or other hormone therapies it could raise their risk of forming a clot.

Note that smoking and obesity can also lead to developing blood clots. As does a sedentary lifestyle or long airplane flights. Add these risk factors to the Leiden V deficiency and it increases one's chances of developing a clot. This does not mean those who have the deficiency can't do these things, but it is always better to be aware of the situation.

If you are required to be blood thinners for an extended term, you should consider wearing a medical alert bracelet or charm.

The other thing that is good to know is, if you have ever had a clot, you can never donate blood, nor can you donate platelets, marrow or organs. :(
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Another risk factor for developing a clot when you have the Leiden V deficiency is pregnancy. Having your girls tested now will help their doctor treat them accordingly.
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I found out that I am homozygous for FVL in 2006 when I had a DVT 3 weeks post-partum. I have 2 daughters and 1 son who have no choice but to inherite one gene from me. I was told by my hematologist to be cautious about testing since life insurance plans can decline you for "pre-existing medical condition" I found that to be the case when I needed to have heparin and fragmin for my last preganacy and all the drug plans were denying me coverage for my medication.

I would say be mindful of injuries, wear helmets for all sports and when the time is needed for birth control the mini pill (progesteron only) would be alright. Be definately speak to a doctor for sure.
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My grandmother inherited a strand of Factor V Leiden from both her parents. My mother, my sister, and I all have one strand that we inherited from my grandmother. I had a blad clot in my leg from hip to knee when I was 19 years old, after being on birth control. I did not find out of this disorder until my fifth pregnancy. So this is a serious disorder not a disease.
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I realize the question was from a year ago, but children should be tested if a parent is diagnosed with FVL. I had phlebitis with my first pregnancy, but didn't find out I had FVL until about 4 years ago. Since then, my sister, and one of my daughters, have found they also have FVL. It is especially important for them, and their doctors, to know if they were to have an injury, surgery, or pregnancy.
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I was diagnosed 9 years ago when I had a large femoral DVT + others lower down both legs. My daughters (then in their early 20's) were tested straight away. They were both neg but I was advised to wait until my son was around 11 before he was tested. He is now 11 and tested positive recently. Although the risks are low at a young age we have explained risks especially as we travel frequently. I feel at least we can reduce the risks further. I would say get your children tested when they are a little older and advise them on prevention.
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