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Re: 10 weeks already seeing MFM

Posted: Sun Aug 21, 2011 08:07 pm
by alexis
I'm in bed on my iPad so this is going to be the worst typed post ever... Apologies in advance.

I think the issue isn't just the outcome for the baby but the GA at onset (of course, these things are related...) The later you get it, the less aggressive they are, because delivery is a much better option at 32+ than at 24-28. My history is even later onset and the attitude is very much that they'll just deliver if i have a problem. No fun, but not terrible.

Also, if they're thinking of you as a chronic, it does seem to change their thinking. The goal for us seems to be good BP management and lots of monitoring for complications. For mild HTN, some guidelines even say there's no benefit to meds. We seem to have a slightly different set of problems, and as a subset of an already poorly understood disease... Well, the information I've found just isn't as good as I'd like.

Re: 10 weeks already seeing MFM

Posted: Sun Aug 21, 2011 06:48 pm
by blythe
Abbysmama, I am very impressed that you're keeping up with this very technical discussion so quickly - definitely a welcome by fire to the boards. We usually try to ease you into the the etiological discussions a little more gently :) .

I have been traveling this week and haven't been able to get on the boards as often as I would like, so I am very glad that Laura (she is correct that she was the first moderator, what she is leaving out is that she was the board Admin for years!) has been around recently. I agree with her and am considering splitting this thread into a few separate threads to make sure Abbysmama gets answers to her questions, but it's past midnight where I am so I am going to leave complicated decisions like that for the morning!

In the meantime, I would love it if we could address Abbysmama's points in her last post. She has a lot of great questions and I would love to see us share more information.

Also, I need to take a firmer hand with the advice I've seen us give one another lately. In the next week or so I will be trying to make our guidelines more clear, so please look for my posts in your active topics feed.

Re: 10 weeks already seeing MFM

Posted: Sun Aug 21, 2011 01:31 pm
by laura
That is exactly what I was thinking about, caryn, even some our docs assumed that c&e supplements were benign- only to find out we had all been wrong. Thats why it is so important to understand that there is no *best* treatment, only the best treatment for *you*, given your own medical history, and generated by you and your doctor.

Re: 10 weeks already seeing MFM

Posted: Sun Aug 21, 2011 01:17 pm
by caryn
My guess is that the doc thinks you look like a chronic, and we often don't get anticoagulants and only get LDA about half the time. :) I also had sudden severe onset at 33 weeks, with pressures of 220/116, and a 24-hour proteinuria of 17,000 (no, that is not a typo), and cerebral swelling bad enough to cause hallucinations. But my son was almost 5 pounds at that gestational age, which means he was getting an adequate supply of blood, and was *fine* - I was the one who was sick. He scored an 8/8 on my admission BPP and didn't drop to 4/8 until *after* they put me on bedrest and started a drug regimen designed to lower my pressures. He was delivered 2 days after admission in an emergent Caesarean because he had stopped bothering to move or practice breathe and started having big decels - probably because lowering my blood pressure down to 160/90 lowered the amount of blood flowing into the placental interchange and lowered his oxygen supply. (He's fine now, too.)

Babies just don't get that big when there's a long-term clotting problem of the kind Lovenox or heparin would treat. And preeclamptics who present like I did and take a long time to recover are what they call "superimposed PE" chronic hypertensives. My issue was hitting the point where my body couldn't handle the inflammation of pregnancy any more. There's no obvious way for either anticoagulants or LDA to affect that, although there is some ongoing research into the possibility that baby aspirin does something to the COX-1 pathway to improve vasculature functioning which might explain the very small benefit to a small number of people that keeps popping up in the big meta-analyses. So every doc I talked to about it said I simply wasn't a candidate for those meds, and I've read enough of the studies to agree with them.

In the aspirin metaanalysis Jasmin linked, the high-risk subgroup was women with a history of PE, and they were looking to see if aspirin might have had an effect on the development of the placenta if taken early in pregnancy. A 16 week cutoff will cover most of the early placental development.

The good news is that no research shows there's something that will definitely help because this isn't something that's under your control and isn't your fault - it's genetic and very much a consequence of placental development, and placentas are pretty unconcerned with a lot of things you could control. The bad news is that this isn't under your control, so you kinda have to white-knuckle the rest of this pregnancy. That's why we're here - there will be other women who have Been There Done That or who are doing it right now, a week ahead or a week behind you. These subsequent pregnancies are nervewracking.

We do try to discuss a lot of current studies either in Announcements and PE in the News or in our research blog on the main page. The monthly newsletter also has research articles in it - you can sign up on our main page!

The big NICHD studies are here: and You'll notice that NICHD ran these studies a *long time ago* and have been trying to get OBs to adopt this information for years, with minimal success because anecdotes are very powerful. Several of the docs involved in these studies are members of the PF Medical Board or advise us. As I understand it they've pretty much thrown up their hands and said, well, there's a slight increase in abruption risk if we can trust the numbers, but there seems to be no other risk from LDA, so if they want to take it, let them. I am not a doc, though.

There's a big study going on right now into Lovenox to see if it works at all. When it concludes we'll know more. Folic acid is supplemented in early pregnancy to minimize rate of neural tube defects so all pregnant women are on it; some MFMs are looking at some very preliminary research like this and recommending it:

But that recommendation makes me *reeeeeeaaaaaaly nervous*. The metaanalysis you linked at the bottom of your last post? It says Similarly, VCE did not reduce the incidence of pre-eclampsia in high-risk (VCE: 250/1744 - 14% vs placebo: 275/1741 - 16%; P=0.24; OR: 0.84; 95% CI: 0.63-1.12) and low-risk (VCE: 56/935 - 6% vs placebo 47/942 - 5%; P=0.57; OR: 1.20; 95% CI: 0.82-1.75) women. In high-risk women, other hypertensive disorders were more frequent in VCE (121/1692 - 7%) than placebo (79/1693 - 5%; P=0.002). VCE stands for Vitamins C and E, which preeclamptics used to be told to supplement all the time. When I first posted to this board practically everyone was trying supplemental C and E on the advice of their MFMs who had read some preliminary studies. And the big study into it found that it didn't affect preeclampsia at all but made women who were supplementing it *sicker, quicker* - which this abstract describes as "other hypertensive disorders were more frequent in VCE". So even things that seem innocuous can harm - the population taking C and E ended up with higher pressures and earlier deliveries.

You know which population has a really low rate of preeclampsia? Recreational drug users. No one is going to recommend that we all run out and start taking recreational drugs to lower our risk of PE because recreational drug users have much higher rates of other pregnancy problems. So this is why I always say *no supplementing anything without talking to your docs about it*. No extra vitamin D or bedrest or folic acid unless your doc knows you're doing it. /Caryn's PSA over, thanks!

Re: 10 weeks already seeing MFM

Posted: Sun Aug 21, 2011 01:04 pm
by laura
I'm a little disappointed that Abbysmama's original post turned into a discussion about the merits of lovenox- that clearly wasn't what she was asking for, and didn't help her one situation one whit. I'm not a moderator here anymore (but since I was the *first* one, I'm grandfathered in ;) ) but would suggest that if there are off-topic discussions that they be split into another thread.

There's a fine line between using your experiences to provide support to another poster and beating a dead horse and it does us all good to remember the difference.

Re: 10 weeks already seeing MFM

Posted: Sun Aug 21, 2011 12:33 am
by cmccaffrey
Hey Abbysmama1109, I wanted to make a comment on your last post. My son passed away, but not from complications directly related to PE, he had what the perinatologist referes to as neonatal SIDS (meaning no apparent cause of death while in a neonatal status; he was 30 weeks 3 days when born). He had a 98% change of survival being that he was born past 30 weeks and that he didn't need much breathing assistance.

I just thought that I would mention, that my doctors have me on a lovenox and baby aspirin regimen too. I had a another medical condition post pregnancy that is commonly treated with lovenox (DVT in leg), but I interviewed with several MFMs who said that even without that condition they would have prescribed me lovenox and baby aspirin in pregnancy. Maybe it is because I did not suddenly develop preeclampsia, but I started having labile pressures in my 24th and 25th week of pregnancy and they thought that it seemed worth it to start treatment from early on. Even if you did not loose your baby, PreE is still a life and death thing, especially if they felt need enough to deliver your baby 7 weeks early.

I would seek out a second opinion from a reputable MFM, just to see if the same game plan in recommended. If they differ, I would get a full explanation from both doctors as to why they choose that plan. I'm not at all saying go with the lovenox and aspirin route, but I am saying make sure that a few different people have the same idea about the type of care you should get. There is nothing worse than meeting with a bunch of new doctors for a preconception consultations and for them to tell you that basically your doctor dropped the ball and that you had poor treatment. It's one thing to get sick because you were going to get sick. It's another thing to have someone who is not versed in the type of treatments you need and since they don't feel comfortable giving those types of treatments you and your child fall through the cracks.

Just something to think about. I'm one of those women who fell through the cracks last time and now I am a huge pain in the butt when it comes to doctors. We trust them because we don't know.... they should do everything in their power to be informed on the newest treatments!

Hopefully my statement doesn't come across as bossy or anything, I just want to make sure you get the medical attention you deserve!

Re: 10 weeks already seeing MFM

Posted: Sun Aug 21, 2011 02:58 am
by Abbysmama1109
Ok I have a couple of random thoughts about all of this to throw out at you guys.

1) My child didn't die as a result of PE so maybe that is part of why the doctor isn't concerned enough to throw everything possible at me, because they don't see it as a life or death scenario? I personally still think it's concerning to be a preemie at 33 weeks although nothing compared to a 20-something weeker which is my fear. I care for medically fragile foster children many born at 24 weeks so unfortunately I know the difference. I have a fear of having a stillborn or a micro-preemie. My deepest condolences to you ladies who have lost a child due to this terrible illness.

2) In the aspirin study I'm not sure why they chose 16 weeks as the cutoff that included the 12 studies, or what specifically the high risk subgroup is, and lastly did they complete the study mentioned at the end of the article? Is there any data that suggest it would be harmful to take it? Like if I were to start even if my MFM didn't want me to would there be any possible complications that would cause her to not recommend it instead of "just try it you never know it might help".

3) It is so frustrating how little data there is on preeclampsia. I have to say I am quite surprised at how few studies there seem to be that say something will definitively help. I was reading about the other ones regarding exercise - One says to exercise, and then the next says it can have a negative effect if more than 30 mintues a day. It's ridiculous how many studies there are yet we don't seem to be that much closer to a "cure" of sorts. Maybe I need to keep reading.

4) My DD has a rare medical condition and there are new studies being done on it alll the time, so much so that the national association sends out an email once a week with all the new studies pertaining to her specific condition and a summary of the study, etc. I so wish the Pre-e foundation had one of those!

5) Found this quote from a member on one of the links. What studies are they referring to? "It is shameful that some are still in favor of recommending LDA despite 2 large multicenter trials conducted by the NICHD Network. Indeed we are ignoring the tax money used as well as the the women who volunteered for these trials."

6) I have not had a chance to read all studies and articles mentioned, so forgive me if this was already addressed, is there a study that pertains to taking Lovenox or of increasing Folic Acid?

I really appreciate all the replies and the stimulating discussion, it really gets me thinking! I feel like I jumped into this too late with the cutoff for the aspirin being 16 weeks I have to play cath-up on my research! I will be 12 weeks on Thursday.

Just found a LDA study on pubmed that says LDA does not help and this study was done very recently

Re: 10 weeks already seeing MFM

Posted: Sun Aug 21, 2011 01:39 am
by caryn
On the topic of things we can do that can both help and harm, here's a link to a recent poster who got steroid shots to mature her baby's lungs: ... 10#p265434

Now, that's really unlikely - but it's a risk worth mentioning.

Re: 10 weeks already seeing MFM

Posted: Sat Aug 20, 2011 08:17 pm
by caryn
I think this is probably one of the areas where people *are* making decisions with their guts, mostly - simply because what evidence there is for LDA is equivocal and what evidence there is for anticoagulants is very, very weak and probably doesn't really count as evidence because the studies are so poor, and so our emotions come into play. As if they weren't in play already, since we all want to take home living healthy children.

I want all our posters to know as much about the evidence here as possible, to be able to take the possibility of harm into account, as well as the possibility of benefit, and then to make and own their own decisions. (From a medical ethics standpoint that's crucial, kwim?)

Re: 10 weeks already seeing MFM

Posted: Sat Aug 20, 2011 03:50 pm
by angieb
I actually met with 2 different mfm's in different hospitals prior to getting pregnant. I do not have a clotting disorder (that they have found), and I had HELLP at 23 wks (actually sooner probably but that was when they figured it out.) One MFM said absolutely not to lovenox and "meh" on aspirin-she wouldn't say no to aspirin but wasn't very excited about it. The other MFM recommended lovenox and especially aspirin. So I was very conflicted and went with my gut- took lovenox and aspirin- delivered a healthy 36 weeker and never did get sick at all. It very well could be coincidental but I am very glad we did it.