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Hughes Syndrome and BF: way in advance query!

(5 Posts)
squizita Thu 27-Mar-14 09:22:56

Hi all - I am due in summer so this is way in advance! Funny what the mind must know now when you're pregnant though eh?

I have Hughes Syndrome/APS ( www.hughes-syndrome.org/about-hughes-syndrome/pregnancy.php#.UzPnCfmzKSo ) and am on clexane and aspirin. I will come off clexane when not pregnant. When not pregnant, unlike some women, although my APS is mild it does cause problems (brain fog and crippling joint/back pain).

I was wondering if anyone knew whether APS can affect BF and if so how? Can't find any info on it (possibly because before 1990 you pretty much couldn't have kids with APS?? Hence no historical research?).
Any personal stories from anyone in this situation or from BF advisors who maybe have an APS lady?
-Bodily/'inside' things like producing milk etc'?
-Practical things like if you cannot move for back pain or need to wrap up warm outside (e.g. expressing, stronger painkillers you can take when BFing etc).

Thanks smile

squizita Thu 27-Mar-14 11:04:18

Just checked with an email help service. Looks like Heparin/Warfarin is fine and I'm likely to be on it anyway, but aspirin is not recommended.
So establishing BF should be fine as I'll be on more hefty meds, but after they take me off the strong stuff (6-12 weeks after birth), ironically that is when I will have to weigh up what is recommended (which I guess will depend on recovery). Quite reassuring as if all goes well at least (possibly more) bubs will have the colostrum and BF for a few weeks.

squizita Thu 27-Mar-14 11:06:05

... if all goes well with my blood I mean! Will cross the actual latching on type stuff when I get there... fingers crossed.

redcaryellowcar Thu 27-Mar-14 14:19:31

I don't know the answers to a lot of your questions, but would suggest you chat through what medicines are bf compatible with a good pharmacist, our local one is great and will look up medicines in his big book to advise on what he thinks will work best!
Do hope you manage to bf, even if only for a short time as its one of the most magical and wonderful things you can do for your baby, makes you feel very empowered!
If you are up for some early prep i can recommend the book 'the womanly art of breastfeeding' its written by one of the ladies who founded la leche league. Its full of brilliant information about bf.

squizita Thu 27-Mar-14 14:38:03

Thanks - it isn't the medication so much as other things 'no one talks about' i.e. literally will it work! smile

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