Wednesday, October 12, 2011

Medical Confusion

First I want to state for the record that I apologize to my bloggy friends – I am WAY behind on reading blogs! I’ve been working so hard lately, as there are so many projects that need to get done before I go on maternity leave, that I haven’t had any time at work to blog. And let’s face it, work is my primary place for blogging… Usually when I go home, the last thing I want to do is get on the computer. But I promise to get better and get caught up!

I have had a whirlwind of doctor appointments over the last two days: my regular weekly OB appointment, my asthma doctor to update my scripts so I could have fresh meds for labor, and a pediatrician. My OB appointment was fine, except there was a bit of a scare – the nurse took my blood pressure and it was 148/102, which is very high for me, at the beginning of my appointment. Then I did the NST for about 30 minutes, and the doc came in. He took my BP again, using what I call the fat person cuff, and it was 122/82, which is more typical for me. So I worried a bunch while getting my NST for nothing… The nurse had told me that there wasn’t protein in my urine, but still! Pretty concerning to have high BP and just sit there and think about it for 30 minutes! At my asthma appointment today (which went fine), my BP was 120/78. So I think it was a fluke and a result of using a too-small cuff, like my doc said.

The doctor visit that threw me for a loop is the pediatrician. I went to a doc that was recommended by some ladies at work, and I expected to like her, and I did. But it was very interesting, and is causing me to do a lot of googling, so I figured I’d come to the best source – my infertile sisters!

As a brief medical history, I’ve been treated or at least consulted with 3 docs: Dr. Sher in Vegas, Local RE, and OB. Local RE ran a bunch of tests at my request after my miscarriage last summer, and I was diagnosed with compound heterozygous MTHFR – two mutations. He recommended taking Folgard 2.2 twice per day, and low-dose aspirin. My understanding is that these are meds for the rest of my life, now that we know I have the MTHFR mutation. Then I had a consult and testing with Dr. Sher, when he diagnosed me with elevated NK cells, and recommended intralipids for that, and in addition to the Folgard for MTHFR, recommended Lovenox during pregnancy and for 6 weeks after birth. I ended up going with Local RE for IVF and a subsequent FET, which resulted in a baby in my belly, but only because Local RE agreed to follow Sher’s intralipid and Lovenox protocols. But even though Sher didn’t think aspirin was necessary, Local RE recommended it, and so therefore I’ve been taking Folgard, low-dose aspirin and Lovenox, every day, throughout my pregnancy.

Meanwhile, after getting pregnant, I went to see my OB, who is fine with me taking baby aspirin and Lovenox, and is now the prescribing doc for Lovenox. He is not a fan of switching people to heparin prior to birth, and instead prefers to induce labor prior to me going into labor on my own, so we can control the timing of labor with the shots of Lovenox. So I will get an ultrasound next week at 36 weeks (can you believe it?!?!?!) and based on that, we’ll schedule an induction somewhere around 38 weeks (so excited – she’s almost here!!!). Nobody has really mentioned what will happen after birth, except I always knew that Sher’s protocol said Lovenox until 6 weeks post-birth.

So I go see the pediatrician yesterday for a “new mom” visit, and I don’t really know what I’m doing. Sure I’ve downloaded some questions to ask from the internet, but really I just want to see if I think I’ll get along with her, and like her style. She asks me at the beginning if there have been any complications with my pregnancy, and I give her the brief run-down: “No not really after getting pregnant. Trouble conceiving, miscarriages, IVF. Diagnosed with clotting disorder so taking Lovenox, so OB wants to induce around 38 weeks so he can control the timing.” Ped doc said that sounds like a good plan, and moves on. At some point, I ask her about her feelings of breastmilk vs. formula feeding.

Now as a side note, I feel very prepared to breastfeed, or at least as prepared as I can. I’ve read a couple books, including Jack Newman’s book, The Ultimate Breastfeeding Book of Answers, which I highly recommend. I’ve done a bunch of research online. I even dragged the hubs to a breastfeeding class. Bought a pump, nipple cream, breast pads and bras. In short, I really want to breastfeed, and I will do anything to make that possible.

I’ve read in the books about how to tell if a doctor/hospital is breastfeeding-friendly. And this new pediatrician, or at least her nurse, broke the number one rule. As soon as I checked in and was brought back to an office, the nurse happily exclaimed that she had all kinds of new mom gifts for me! Lots and lots of formula samples… But giving the office and the doc the benefit of the doubt, maybe they just want to get rid of the stuff that I’m sure the formula companies give them…

Anyway, I asked the ped doc about breastmilk vs. formula feeding, and she said that breast is best. She firmly believes in breastfeeding. But she’s supportive of situations that require formula. “Like for you, if you need to take Lovenox after birth.” I’m sorry, what? She said that Lovenox is a bad drug to take if you’re breastfeeding, so if I’m taking that, I’ll need to feed my baby formula. I responded that I read that Lovenox has a high molecular weight, and will therefore not pass into breast milk. So she got out her meds for breastfeeding book, and we went to Enoxaparin (generic name for Lovenox) and like she said, it’s listed as a Level 3 drug. Level 1 – great. Level 2 – just fine. Level 3 – no studies have been done to prove anything either way. Level 4 & 5 – bad. (At least that’s how I interpret the levels – some of you science types could refute me…) And she explained, which I wasn’t really aware of, although it makes sense, that the levels for breastfeeding are different than the classifications for pregnancy. I knew Lovenox was Class B for pregnancy, so I figured it would be fine for breastfeeding. But she said it was Level 3 – no studies have been done, so she doesn’t like me taking it and breastfeeding. Yes, the book mentioned the high molecular weight and that it’s unlikely that it could pass through to breast milk, but she wasn’t buying it – it was a Level 3, and that’s it. But it’s a judgment call and it’s up to me. Also, aspirin is classified as Level 3, and it has been linked to Reyes syndrome, but not in low doses. So that is up to me as well!

I’ve read a bunch of stuff online, and most things that I read say that both Lovenox and low-dose aspirin are just fine, but it is concerning to have a pediatrician disagree with you… I consulted Jack Newman’s book, and he mentioned low molecular weight heparins (like Lovenox, but not specifically addressing Lovenox) and that it has too high of a weight to get into breast milk. He doesn’t address aspirin at all.

Yes, I’ll talk to my OB about it, but I doubt he’ll have any kind of opinion as he’s just following the recommendations of other docs. Part of me just wants to stop both Lovenox and aspirin when I give birth. Yes, I know there’s a risk of me developing clots, but I’ve never had any kind of issues in my life until trying to get pregnant. I would have never even known about this if I hadn’t miscarried! And using Lovenox and baby aspirin is somewhat controversial for compound heterozygous MTHFR folks, so maybe I don’t even need it… I hate that once again, there is no clear-cut answer when it comes to infertility and the things we do to combat it.

All I know is I want to breastfeed my little Alex, and just be a normal mom. Is that too much to ask???


  1. Argggg I can see your frustration. I have continued to say that IF is so different depending on whom you speak with. Sher told us to use intralipids as well, which we did with him, and now RE2 who will do our next cycle thinks it's 'hog-wash'.
    Did you ask if heprin is any better when breastfeeding? I am so so sorry...If you've fough IF, once you get pregnant you should have it smooth sailing!

  2. Check out this website. you can use the Lactmed search. I love Jack. I have actually corresponded with him quite a bit. good luck.

  3. That's a tough one. I don't know anything about this, but I hope between your blog friends, your doctors, and your mom instinct, you'll come up with the best scenario for you and baby. 36 weeks!! You are almost there!

  4. How frustrating. I'm sorry but don't know anything about these things. hope you get all the answers you need before it's time, and wow it's close now!

  5. My sister had to do lovenox shots with two of her pregnancies (we have MTHFR too) and she brestfed both babies until about 6 mos with no issues. I would say you are safe to take them and BF. Both of my nieces are just fine. One is 5 now, so you would think we would know by now if there were issues with it.

    I can't believe you are already 36 weeks! Where does the time go?

  6. I don't know if this helps, but I have MTHFR (one mutation) as well as two other supposed clotting issues and my doctors said no Lovenox is needed after birth. Only if I'd had a C-section would I have taken it for 6 weeks after. They also told me Lovenox is fine for breastfeeding. So I've had no Lovenox postpartum and have been horribly negligent about taking aspirin, as I was told to do for life. I've taken it maybe 3 times. And I've had no issues at all. I think everything will almost certainly be fine for you and Alex no matter which way you go on this.

  7. Hmm...that is frustrating. I don't know much about MTHFR, but isn't the homozygous MTHFR worse? I thought that was the one that required lovenox.

    I had a raging case of thrush that required more diflucan than my OB was comfortable prescribing, so I got some literature from my LC on the safety of it when BFing. I think you should consult a lactation consultant and have them check a book called Medications and Mother's Milk: A Manual of Lactational Pharmacology. It might have more info on lovenox in it. Also, make sure you find an LC who is an IBCLC. She should be able to get you more info on lovenox and breastfeeding to give to your ped. It doesn't hurt to find one now anyway in case you need one after Alex arrives.

    You also might want to post the question on Dr. Sher's board and see what he thinks. Good luck! I cant believe your baby will be here in a few weeks! So exciting!

  8. How frustrating. I don't have any answers for you, but I am sending you lots of love!!!

  9. Alex, you got very good answer above. My thoughts: if you will require a c-section I really think you should not stop the levonox. If you have a natural birth than probably you could taper it down and that's the end of it. The best situation would be for you to find some answer on the safety of the Levonox and breastfeeding at the same time.
    I wanted also to tell you to please keep an open mind about bf, it's very likely going to work just fine, sure million of women do it, but there are cases in which no matter what you try it's not working out (my case) and I was so so upset about it, it took me a long time to get over the sense of failure. I really wanted to bf, I never considered not bf, had the hospital grade rented pump, was taking even medications to have the milk come in and I was in tears every time after pumping a negligible amount of milk. My paedy had to tell me to stop, that I was ruining that moment for me and that it was ok if Oliver was fed formula, he was well and growing, I couldn't do any more than that. You feel terrible, you read everywhere that there's no such a thing as not having enough milk supply, that's your fault for not pumping long/frequently enough. it was awful. I feel it's important to be committed to bf, that's the only way it's ever going to work as I hear it's hard work, but just be aware that sometimes it doesn't and the most important thing is that your little girl will grow healthy and happy. Mom has to be happy too. If at the end of your research you decide that you want to take levonox and don't feel 100% about the safety of it in bf, please know that it's not the end of the world. Love, Fran

  10. How frustratibg!! I am so sorry If is impacting your breastfeding goal. I hope you can get a true answer and feel comfortable!!

  11. I don't have any advice, but I hope you can get some good answers.

    And, seriously, 36 weeks????!!!

  12. Personally if the OB can't give you a good reason to stay on the med after birth I'd stop it too. Breast feeding is something that you shouldn't give up if there isn't an extremely good reason for it, IMO.

  13. This is so frustrating! I am sorry you are getting this mixed answers. I really thinks there needs to be more research done on medications and pregnancy. It needs to be a priority. They just give us these diagnosis, give us a pill..but where is the research. Sometimes I feel like doctors get a commission for giving us pills. But anyways..I think I may just be transferring from my own situation...kind of. But really 36 weeks..your baby is almost here. I wish I had the answer. There is so much pressure for us mommies and pregnant new mommies. We have so much pressure to not hurt our babies. I am sorry I do not have the answer. I am positive you will make the right decision for little Alex:) We are both having babies with the name( nickname) Alex. very cool.:) Hugs

  14. Alex, I definitely see your frustration! I would just do what you're doing and get more opinions. Maybe *IF* you decide not to mix Lovenox and BF, you can pump-and-dump for a few weeks and compromise on when to taper off the Lovenox. It's not ideal. Are there any message boards about women who have taken Lovenox while BF? Maybe you can start a messag string about it yourself?

  15. Hey girl...I know its been forever since I have commented but yes I am following:) Soon girly you will find out why I havent been blogging/commenting:))) Anyways I was so surprised by your post as my OB, Ped, and High risk OB all said Lovenox/Baby aspirin are fine to take while breastfeeding. I know risk of blood clot is highest after birth and thats why they recommend 6wks which I did. I also took my baby aspirin for that long as well. I would def check some more sources but I will say my little Brycee is perfectly healthy!!!

    If you have any BF questions or need support just ask:)

  16. FYI
    People see Jack Newman as a "god" . I actually hired him when I had issues with feeding with 1st one. He was the most arrogant man I have known. I was using a nipple sheild due to cracked bleeding yeast nipples as well as my nipples were flat. I asked him about it, he ripped it out of my hand and threw it in the garbage without even asking me.
    He also did a tongue cut of my daughter (cuts under the tongue to help them be about to open wider). But he barely had explained the procedure when he whipped out the knife and did it. I was not impressed at all with him. He doesn't support formula in anyway at all or mother's right to choose.He only wants you to breast feed regardless of the impact on mother. My kid had lost 1/2 pound in 3 weeks and he still was against any supplementing. I swear, his books make him look good. But in person, he is an asshole!!
    Just thought I would share....
    re: meds and breastfeeding - it is a personal decision and one that only you can choose!!

  17. Oh I never even thought of all that! I have no advice, but good luck! I can't believe how close you are! I can't wait to meet her :)

  18. I don't make milk so from the formula standpoint formula is awesome for folks with no options and I was disappointed in the beginning but I couldn't believe how excited everyone was to be able to feed Babe, so that was pretty awesome.

  19. Sounds like you got a lot of good advice! It's frustrating when dr's conflict with one another!!!!! I was on Lovenox for no known blood clotting disorder (more to help with implantation). I took it until about 20 wks. But I got conflicting advice from all my dr's about when I should stop taking it.

    Bottom line, pray about it and do what YOU feel is best for your baby!