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Everything posted by katybops

  1. Wishing you good luck! The haematologist was quite positive about it. Said it interacted with so much less than Warfarin (and I'm on a bucket load of other medications), and didn't require the constant INR tests. I asked about reversing it and she said look, if you're in an accident that you're losing blood at that rate this won't lose or buy you any time. It's got a short half life so there are things they can do to make sure you don't bleed out if you're being operated on, etc. I felt quite reassured. I have to add at this point that I'm just repeating what I'm told and that I have not googled it. I have tendencies to google things to death and become a Google GP about subjects so I'm just trying to roll with it
  2. Not especially. It has a short half life and taken twice a day. Doc said if you're in a situation that you're going to bleed to death it won't make a jot of difference.
  3. Not really, other than Warfarin interacts with a couple of other medications that I'm on and the last time I took Warfarin it took 8 months to stabilise my INR. I just had a DVT in my arm which is the first spontaneous clot I've had (I had a PE in 1999 after a c-section) so they wanted to put me on something. Apparently this one is now approved by NHS / NICE so they were quite willing to put me on it
  4. Thanks James. They've put me on the newer one rivacoxiban?
  5. Just thought I'd let you all know that Harry underwent surgery without complications. Unfortunately it wasn't successful as the cause of the SVT he's been suffering was found to be something a little more complicated and they were unable to ablate that area safely. Also since the surgery he's been having more episodes. We see the surgeon again in 3 or 4 weeks to discuss further options. Re the PSD, he tested for the genetic mutation so I guess that is a definitive answer that he has PSD. He is heterozygous for it - meaning he only inherited it from me, not his dad (who as far as we know does not have it). He was anticoagulated during surgery as a precaution and thankfully it was not a problem.
  6. I don't know the answers - I was quite dubious as to whether this was going to be accurate and they were insistent that it was. He is heterozygous for PSD (i.e. just has the gene from me not from his dad), and his levels were about 29 and 29.... mine were 11 and 15 so they are higher than mine were when I got tested... but still below normal range. With the genetic testing done is it likely he'll 'grow out of it' ? Hopefully the heparin will reduce clot risk. Thanks for your good wishes xxxxx
  7. Just a quick update in case anyone is interested. The DR (first a fellow and later a consultant) at Seattle Childrens Hospital both wanted him tested for PSD and said that the test should show conclusively whether he has it by now (7). They say if he does have it, given the length of the surgery (5 hours) they will recommend anticoagulating during but not before or after. *fingers crossed for a negative result*
  8. Thank you SO much James... best wishes to you and yours too xx We are seeing the Hematology dept at Childrens Hospital on Tuesday so I guess we'll talk to them more about whether they will bother testing him etc. Scary times X
  9. Hey James or anyone else that might know the answer to this My 7 yr old son Harry is about to have a cardiac ablation procedure. It's a 5 hour general anaesthesia and the consultant was explaining that while they treat the left side of the heart small clots form around the 'thing' (sorry, not tech enough here) which will usually disperse without issue but if they treat the right side they'll anti coagulate because the clots are more potentially threatening. I mentioned that I have Protein S Deficiency and that we don't know if Harry has it, so he's referred us to a Hematologist prior to having this surgery done. It's my limited understanding that PSD testing in a kid his age isn't necessarily going to be reliable so I'm a little nervous. If they test him he might show negative even though he has it? Is he at more risk of clotting in that case? And If he does have PSD at 7 does this mean he won't have the same dramatic clotting issues that an adult has? Yours nervously Katie x
  10. Something has just occured to me about the Vit K issue.... having decided not to go ahead with it. I apologise if I've ever posted this before, I have pregnancy brain and can't remember but would appreciate any input. Breastfeeding while on Lovenox..... tiny amounts may pass into the breastmilk, correct? Ergo, will I be putting my baby at increased risk for clotting and therefore should I do the Vit K after all? Yours confusedly. K x
  11. I just had an interesting chat with my perinatologist about this issue. He was intrigued by it, and is going to research, discuss with hospital pediatricians, and call me back. One thing he did say was that the risk of haemorrhagic disease is X and the risk of clotting is Y, and in the case of potential inherited clotting disorders the clotting risk (Y) is going to be higher, and he would be interested to find out which wins out in the risk/benefit ratio but that the concern of giving it made alot of sense to him. NB: The amount of Vit K given to a newborn is 9000 times the amount of a normal adult. Just re-reading over the thread and there was mention of the potential risks with whether when the bodies normal system kicked it wouldn't that put you over the edge anyway... I'm thinking not, given that the normal level of a baby is considerably lower than this.
  12. My heartfelt sympathies to you Lissy-Lou..... so sorry to hear that you lost this one. Wishing you every success for future pregnancies xxx
  13. Just wanted to add my 'Welcome' here to you Lissy-Lou, and congratulations on your baby due in November! Fingers crossed that all goes incredibly smoothly without problems
  14. Thanks guys - am amused by my pregnant brain forgetting I started this debate last pregnancy too! Couple of points. Oral Vit K - wasn't this trend started during the vit k injection = leukemia scare (now debunked) ? I know St Thomas's hospital in London offered it as standard for a while, because of this. Newborn Haemorrhagic Disease - somethign like 1 in 10,000 babies? Very rare. I think I generally subscribe to James #2 point but given that it is State Law here in Washington to have Vit K given at birth, and refusal to do so means you are reported to Child Services (yes really), I am hoping that I can make a case for a pause for thought given the PSD situation. My general feeling is that babies probably don't need Vitamin K and it's one of those things that's been accepted into widespread medicine without much justification other than a very rare disorder which most doctors have never seen. It's a little like the policy (again, law) of putting antibiotic cream into the eyes of a newborn to treat infections that the baby may have got coming through the birth canal. This is regardless of whether the mother has any infections. Or whether she has a c/section thus not exposing the baby anyway. Poor Harry had this done to him at birth and it clogged up his eyes and tear ducts for days, he could barely open them. I would rather not have them done this time, esp. as I'll be having a c/section, but again I have no choice.
  15. It has concerned me that giving the Vitamin K injection to a newborn when you've got a clotting disorder might not be the best course of action. Our PSD children have a 50% chance of having the disorder and I am not too sure that giving them a clotting agent is wise. I had no medical backup for my theory but I just came across this on a website so I thought I would C&P it. Obviously it refers to FVL but maybe PSD would have similar concerns. Midwifery Today E-News (Vol 2 Issue 19) is a special on Factor V Leiden (FVL) - a genetic condition which increases the chances of blood clots developing. Depending on the area, between 3% and 10% of caucasian people carry the FVL gene; no stats are given for people from other ethnic groups, and it is implied that it is a caucasian anomaly. The baby of someone carrying FVL has a 50% chance of carrying it too, and the author speculates that routine vitamin K administration could be dangerous for these babies. Interesting thought - and how many areas routinely test women for the condition? If they don't, routine vitamin K adminitration could be putting their babies at risk. I've copied an excerpt below: o=o=o=o=o=o=o MIDWIFERY TODAY E-NEWS :a publication of Midwifery Today, Inc. (www.midwiferytoday.com) Volume 2 Issue 19 May 12, 2000 Factor V Leiden Code 940 o=o=o=o=o=o=o All the following information on Factor V Leiden has been prepared by Jennifer Rosenberg, CD (DONA). Pregnancy, Clotting, and Factor V Leiden: An Overview The past 10 years have brought new understanding of and explanations why some women clot on birth control pills and during pregnancy. Research into genetic origins of disease has uncovered many coagulopathies, some of them surprisingly common. The most common is Factor V Leiden, also known as Activated Protein C Resistance, which carries a 3-10 times greater risk of clot when someone has one copy of the gene and 30-140 times greater risk of clotting for someone with two copies. Between 3% and 10% of Caucasian people are heterozygous for Factor V Leiden, and a much smaller percentage are homozygous. In Sweden the rate of heterozygous mutation may be as high as 15% in some areas, while in other parts of the world and among other races only a fraction of a percent of the population may have it. It is thought that the original mutation occurred as much as 20,000-30,000 years ago in a single individual. Women with Factor V Leiden (FVL) have a substantially increased risk of clotting in pregnancy (and on estrogen containing birth control pills or hormone replacement) in the form of DVT (deep vein thrombosis, sometimes known as "milk leg") and pulmonary embolism. They also have an increased risk of preeclampsia, as well as miscarriage and stillbirth due to clotting in the placenta, umbilical cord, or the fetus (fetal clotting may depend on whether the baby has inherited the gene). Note that many, many of these women go through one or more pregnancies with no difficulties, while others may miscarry over and over again, and still others may develop clots within weeks of becoming pregnant. ... Remember that approximately one in twenty of the women you serve will have FVL. Approximately one in a hundred of women with FVL (estimates vary radically from a 1% thrombosis rate (4) to a 25% thrombosis rate (my hemotologist) will have a serious DVT during pregnancy... FVL is inherited. This means that for every pregnant woman who has FVL, the child she carries has at least a 50% chance of inheriting the disease (more if the father also has it). .. Vitamin K encourages clotting, and thus there is some concern among parents with FVL about giving their newborns the prophylactic vitamin K bolus. At the very least such treatment should NOT occur immediately after birth, when hormone levels are still up, in my opinion as a parent. And it may be advisable (though research has not been done!) to do the quick screening test for FVL (not the genetic test; this test simply checks to see how resistant clots are to activated protein C) prior to giving the infant vitamin K later. Perhaps testing cord blood for APC resistance immediately after birth and only giving negative babies vitamin K would be reasonable. Another approach would be to delay the vitamin K shot for 6-12 hours if not longer, to allow hormone levels to drop. I am aware of one family that feels their baby's death was caused by the vitamin K shot. Although the story is completely anecdotal, it echoes fears I had with my own daughter. (End of excerpt from Midwifery Today E-news. Please visit the Midwifery Today website at www.midwiferytoday.com.)
  16. I have been advised to take Folic Acid daily for the rest of my life because of it's natural anticoagulant abilities and because of it's benefit to heart health, and stroke prevention. I'm currently pregnant and taking a very large dose and will decrease to a smaller one after the baby is born. I don't have to take anticoagulants on a normal day, only when pregnant, but Folic Acid is something I'll always take... my Doc is a huge advocate of it.
  17. I must say that in my last pregnancy (injected throughout + 6 weeks post partum) I was reassured that it wouldn't cross the placenta and that breastfeeding was completely safe. I did it without any problems. The babycenter BBS has a list of safe drugs to use while breastfeeding and Lovenox / other LMWH's are listed as OK in usual doses (http://www.babycenter.com/general/baby/babybreastfeed/8790.html). It says the chart was compiled by Philip Anderson, a pharmacist and the director of the Drug Information Service at the University of California, San Diego Medical Center.
  18. My doc explained the lumps to me the other day. He said that the needles for Lovenox are so huge that they go far too far down when you inject. They end up in the fat cells and basically kill them as the Lovenox is released. He said to put the needle in then bring it out at least half way........ this should stop the lumps and some of the bruising. (having said that, I tried that yesterday and the bruise is horrendous!)
  19. My tummy is lumpy as can be too...... awful. Funnily enough I didn't have this problem when I took Fragmin, but Lovenox seems harder on me somehow
  20. It is indeed Harry! Time goes by much too quickly doesn't it, hard to believe how big he is now
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