Why are newborns not tested for this condition?
This condition has only been able to be diagnosed since 1994. Very little is known about it and I am sure unless one of the parents has a diagnosis, they won’t even think to do it. I do not want my children tested for it until they are old enough to know why they are being tested.
I agree that children need not be tested for this, I’m talking about at age
21 or even 35. I had to have a cardiac ablation done in March & 17 days
later developed a pulmonary bc. Had they tested my blood first, rather than
after the fact, they might have been able to treat me postoperatively and
prevented the blood clot. I can’t believe the lack of information out there
about these blood factors. I also have Factor VIII, another layer of
hypercoagulability.
----- Original Message -----
From: “Cptamerica113” factorv-cpt4674@lists.careplace.com
To: rkanzler3058@wideopenwest.com
Sent: Friday, July 13, 2007 9:52 PM
Subject: Re: [factorv] Factor V Leiden
I have to disagree with new borns or toddlers not being tested. They discovered my blood clot in January when i was 18, it ranges from my lower left theigh all the way through my groin and into my abdomen and is completely hardend. I stayed in the hospital for 10 days not even being allowed to get up to go to the bathroom becuase they thought itd move. They said if i had arrived at the hospital hours later i would have been dead, they told my parents that they didnt know how i even survived. They said they think the clot had started 10 years ago and just kept building up, meaning i was around 8 or 9 when i first started clotting. Ends up I do have factor v. The only person my family knew of who had it was my uncle, but no one ever got tested and my parents never got me tested because what at the chances of someone as young as me getting a clot? After i had this happen to me, about everyone in my family got tested including my parents, siblings, cousins aunts/uncles ect. and just about everyone has it. I know i’m going to get my kids tested as soon as possible so they dont have to experience what I did.
July 2005
Hi there!! My name is Lori My daughter Lauren was 12 when she had a DVT w/ a PE. She started her period when she was 10, at age 11 her father was tragically killed and her periods went crazy. When she was 12, I took her to the obgyn and they put her on BC pills. 2 Months later we ended up in the ER. She spent 9 days in ICU. You know the drill coumiden, heprin, lovenox, and they administered TPA meds for 49 hours I believe.
They put a filter in the next day. At day 6 she was diagnosed with Factor V Leiden. That explained a lot. One month later we went in to have the filter removed and the DR’s didn’t talk with each other and she was taken off her coumiden for 5 days. That ended her back in ICU for 3 days, this time with a collapsed 7 inch left iliac vein. Against her vascular dr’s advice I went for the 7 stents and she has done great. Either that or they might have to amputate her leg in about 10 years.
After losing my husband and now this I have to choose quality of life not knowing the outcome. Now almost a year to date of the DVT w/ PE we are having troubles again. For some reason her INR’s are 1.1……1.7……1.8 and she has had a period for 10 weeks now. She is anemic and 1 point away from a blood transfusion. Her PCP is concerned the Vascular DR ok’d her to be put on a low dose of Provera. As I have learned with FVL that hormones are the enemy. She also has a platelet disorder as well. We had the genetic testing done only to find out the 2 disorders 80% of the test was inconclusive because she is on coumiden. She was sent back to the OBGYN and she doesn’t know what to do. So she is on Prometriem now 2 times a day, with an INR as of today 1.7…………I am so worried having the knowledge that I have and the lack of DR’s to help us, no filter and no hospital to care for her and monitor her. Please help me I can’t stand to lose another family member. I want her well again or as we know it to be with FVL. Am I silly for worrying?? Would it be better to take her uterus or continue with this heavy bleeding??? She is heterozygote by the way.
2007
It has been the most testing time of my life, keeping her safe and no doctors knowing what to do. She has had yet another PE DVT October 2006. She has had 2 blood transfusions, due to heavy periods. She is 16 now, just turned. The blood clot is in her leg all the way up to the groin. She had a DNC in March to stop the bleeding, put back on BC pills while being anti-coagulated worked for a month. She has been bleeding again for 2 months solid. Only after being stopped for a month. The time before lasted 6 months. She finally was just diagnosed with Poly Cystic Ovarian Syndrome. Finally some help with the periods. She will have an IUD placed next week with the progesterone it will be local to the uterus, making her periods lighter or non-existent. Seeing that the hormones are only at the site, it will not collide with her Factor V. Also about weight gain, seeing she struggles there as well. She will have her metformin increased to 1,500mg a day, that will help with the hormones as well. She was referred to and Endocrinologist OBGYN, this is the only treatment he can offer seeing her limitations with FVL. He has a PHD and is the top here in OKC and her situation is unlike anything he has ever had to treat. Her regular OBGYN immediately said to put a filter back in her, so now that she is old enough the interventional radiologist agreed so we will be doing this before school starts as well.
I think children should be tested, especially girls. My son was tested and didn’t have it. I have no signs of it. My husband was killed in 2002 so I have no idea on him and his sisters have not had any children, or birth control pills. His Mother has RH neg factor blood if I remember right, she has lost 2 sets of twins after birth. Seeing that they are putting girls on the pill earlier and earlier because of hormonal problems. Having that test would have saved us so much heart-ache. The history of the family members have to older than 50 and have had blood clots before they consider it a risk of having blood clots. She will be on warafin for life. We have no idea if she will be able to have natural children. I know the genetic testing is being done as we speak. With her FVL being severe she might have to for go that option. Not only risking her life, but the well being of her children as well. That is a lot for a 16 year old to think about. As a Mother I want to make the right decisions for her concerning her uterus. They wanted her to have a hysterectomy or another procedure that would cut off all blood supply to the uterus. So I am praying that the IUD will be just what she needs and that she is able to carry it. I want to save all that I can so when she is older and is married and mature she can make her own decision about her body. I will love my grandkids whether or not they come from her or someone else. My main concern is for safety, health and well being. Finally I can take a deep breath, and perhaps finally we have a handle on this. The filter for life will definitely put us at ease. I hope this helps someone out there….Lori BoothI would rather my children get tested after we talk about it. I was 23 when my clot was discovered and it ran the entire length of my leg, also broke off into a PE. I know I am preaching to the choir when I say it is a highly painful experience coughing those PEs out, and no I do not want my children to go through that. So when they are five years old or so and I can explain the basics to them, then I will get them tested.
Everyone in my family was tested and I am the only one with it. I also tested positive for antiphospholipid syndrome, which just increases my chance of clotting. Again, noone in my family tests pos for that.
Lori, I hope things are going better for your daughter (and you). I thought
FVL complications were something peculiar to older people like myself, which
the literature on the web suggests. I was amazed to read your posting (not
to mention heavy-hearted), as well as that of other young people. I’ll add
you and your daughter to my prayers. Thank God for God.
----- Original Message -----
From: “breadlady1996” factorv-cpt4674@lists.careplace.com
To: rkanzler3058@wideopenwest.com
Sent: Wednesday, July 18, 2007 4:55 PM
Subject: Re: [factorv] Factor V Leiden