PLEASE help! Breastfeeding query.....

[clouiseg]

Hello all!

I really hope someone can help...

I had my 3rd DD 2 weeks ago by C Section. 3 days later I started coughing up blood, struggling to breathe & having chest pain. I had a HELL of a time with my hosptial. They ordered an x ray then LOST the card so it was delayed by 24 hours (!) then the x ray manager refused to do a CT Scan as I wasn't a 'priority'! I was told to wait 4 days til the Monday! At 3am I was struggling to breathe so badly I was in tears & asked the night midwives to call the doctor out ASAP. They offered me a ZANTAC for INDIGESTION!! I eventually mustered the strength to holler at one of them and the Dr was bleeped. He made me feel daft & said its probably a chest infection brewing. Eventually my consultant kicked up a stink & I was sent for a CT scan which showed I have a large PULMONARY EMBOLISM! So they had dismissed a life threatening condition & as a result I'm now on Clexane for a minimum of 3 months.

My problem is that I am breast feeding my DD and I have an issue with the dose I'm on. There is only literature supporting the safety of feeding on a dose of up to 40mg a day. I am on 160mg a day (injected twice daily into my tum). My GP has insisted I stop breast feeding immediately as its unsafe for DD, but the hospital says its safe! The Breast feeding network said its fine...until I told them my dose and then they back tracked and decided they weren't sure at all!!!!!

I've even been e mailing a Pharmaceutical Manager who only sent info on a max dose of 40mg (DUH!!).

Is anyone out there in the know about the ACTUAL safety of BFing on such a high dose for at least 3 months? I'm in turmoil. Not only have I had a horrendous experience with my PN ward but I'm terrified I'm harming DD as no one seems to know about my particular dose!

I've asked about Warfarin but I'm not allowed it til I've had at least 3 months on the Clexane.

Any advice would be REALLY greatly appreciated. Thanks. X

i've got no advice i'm afraid but i'm so sorry you're going through this. Feel very sad for you.

First of all, congratulations on the birth of your baby.

I feel for you and your dreadful experience. I have also been in the same position as you when the hospital and consultants are not quite sure what is or what is not safe. I asked to look it up on the internet while an inpatient and a kind nurse gladly complied.

Sometimes, as in yours and my case, there is no definitive answer, so do what you feel best. I successfully breast fed for over a year but gave my baby a full bottle of formula every evening for a whole year. This did not affect my milk supply and 'diluted' the effects of the drugs, if you see what I mean. My baby is now 11 and fine, so good luck and trust your instincts.

hmm, it seems as though you ahve asked the people i would normally suggest asking.. can your consultant find out?

so sorry for what you are going through, as soon as i saw the words 'sstruggling to breathe' i knew what you were going to post . how scary.

sorry to not be able to offer more advice.

Aww ty idontbelieveit

It has been horrendous and I fully intend to put a complaint in when I get enough strength!

Its hard enough to recover from a VB and adjust to having a new baby, but to recover from a Csection with the added health issue of a PE is hard work! Not to mention the poor treatment in hospital! I also found out that I shouldnt have been discharged for a while until the success of my treatment was established! So in all its been awful, but I'm trying not to let the trauma override the happiness of DDs arrival.

I think that if the NHS aren't informed about the effects of the medication they prescribe there is something seriously wrong! Fingers crossed there will be a wise MNer out there who can help....X

Does this help ? It says that as the Heparin is a large molecule it doesn't make it into the breastmilk at all, and is therefore safe at whatever dose

Ty kidowner & lulumama

It was my consultant who referred me to the Pharma Manager so theres no hope now lol.

Its given me food for thought on the one bottle of formula theory, I can see sense in it! I really battled previous BF demons from DD1 to be successful this time so I'm annoyed that the chioce is almost being taken away from me if that makes sense?

I will switch immediately if I find out there is even a hint of a risk to DD....but don't want to stop on the off chance that my milk will dry up and I'll miss the opportunity!

God what a dilemma.

CMOTdibbler ty.

I looked at this site on the patientline internet telly thingy (sorry!) whilst on the ward. The sad thing is it appears that the tests have only gone up to a max dose of 40mg a day which leaves me out!

This one mentions monitoring the babies clotting time which is almost unheard of in the NHS so they are somewhat behind the times it seems! I can see myself having a fight but will print this as supporting evidence!

X

I'm not a doc, but once your PE was confirmed what was the reason for not starting warfarin immediately, ? healing for the c-section scar?? as we used to change patients over to warfrin from high dose clexane once PE was confirmed as a definitive treatment. (iirc)

Personally I would be contacting you PALs liason with your complaint now and let tem chase the dr's who can do the research and get back to you ( ask to see formal evidence, otherwise they may just say it's not safe).

Another route would be rather than the obstrician (who I presumme you are still under) see if you can speak to a haematologist who may be more aware.

It may be the case as with many of the drugs used in morning sickness that there is no hard evidence out there due to the ethical implications of doing the reaserch... which doesn't help you either.

Agree with Doris, why didn't they put you on warfarin straight away? I've been out of medicine for 18 months but three months of clexane sounds a bit odd to me. IIRC warfarin is OK with bfing so there would be no problem if you were on that. (except for the hassle of getting to anticoag clinic with a new baby).

I thought you might have. Thing is, that if the molecule is too big, then it won't go across, no matter how much you have (like straining peas in a sieve - 1 pea or 100, they still don't go through) in your bloodstream.

You can see a number of patient leaflets for the UK hospitals about Clexane in pg and after, and they all say that it's OK to bf.

I'd guess that there isn't the data for full dose anti coagulation as there aren't that many women affected, so a particular hospital would struggle to get the data to publish

Unless you are taking a drug which has a long biological half life, then the one bottle of formula approach doesn't make any sense tbh - it's not like Clexane will accumulate in your baby and they might benefit from a chance to process it out with no ingestion.

Additionally, you can't take Clexane in tablets as its broken down in the stomach right ? So that would happen to any passed onto your baby in bm too

Might be worth calling the manufacturers of the drug and asking, if you can find a number. I did this after a pharmacist queried a prescription for my daughter on the grounds of her age and they were v helpful. Or, as you prob feel crap, get someone (your mum? DH?) to call for you.

Ty so much for your responses, its really great to hear any advice!

I'm not sure why they didn't put me on Warfarin....! I was put on the Clexane by the Obs team whilst still on the PN ward (although there was a HUGE argument between the Obs & the medical team over who was responsible for my care and what dose I should be given!!)

All I know is that a post natal woman should not be treated as a 'normal' PE patient as our blood is stickier...hence the argument between the professionals in hospital! I was slightly worse for wear following the Csection & feeling unwell with my chest so just agreed to the treatment!

I asked my GP about transfering to Warfarin but apparently the partners had a meeting about me & it was recommended that I stay on the Clexane for the time being. I do feel a bit out of the loop with the whole situation, and slightly uninformed. But the pea explanation from CMOT was brilliant! It sounds very simple when described that way which is a huge help! And yet the link to the website posted earlier suggested that infant clotting should be monitored....which leads me to think there must be a reason....???

God, who'd have thought the do I / don't I breastfeeding saga would extend into the world of prescribed medication??!!!

many thanks again for any advice though

Also forgot to mention in response to horton that the manufacturers recommend you do NOT breastfeed on my medication, which incidentally why i queried it in the first place after idly reading through the advice leaflet...!

They have to say that - the manufacturer applies for a license to market for adults/children/bf and pg women/other groups by submitting their clinical evidence that it is safe and effective for all those groups. Most people won't go into randomised trials for themselves when pg, or for their children when it comes to drug trials, so virtually no drugs at all are actually licensed for pg and bfing.