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Infant feeding

Get advice and support with infant feeding from other users here.

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Original poster

really really torn... don't know what to do

10 replies

teddiegoestopeckham · 28/11/2011 20:37

Okay I am really really torn. So maybe someone could help

I suffer from a rare disease that means I am on pretty nasty medication and have been since I was about 19. In my day to day life it doesnt effect me except meaning my immune system isnt working 100% making me more susceptible and I can be knocked for 6 a bit by a simple cold. This disease flaes up at some points and the medication is to stop these flare up effecting my kidneys (without these meds my kidneys during a flare up could fail completely and mean I would need a transplant)

I can go 2 years without a flare up or could have 3 flar ups in a year. Some flare up last around 6 months or could last 2 weeks.

Anyway we had to be very careful about making sure meds were out of my system before ttc and I cant be on them while pregnant (Im due in March)

So it is about a year of the meds all in all. (If i'm not having a flare up there is no risks to my kidneys) And currently I'm fine.

I always figured I would breast feed but that would mean more months of meds.

I'm really torn. Docs say it is my choice and even being pg is very very risky (if I have flare up) and DH says it is my decision and he will support me whatever

I dont know.. really I dont

Any help would be lovely- thanks

OP posts:

TruthSweet · 28/11/2011 20:43

Would you be able to contact the Drugs in Breastmilk helpline for more information about your medication. There may be more compatible alternatives or ways in which to time taking the medication to minimise exposure that could be of help to you in deciding what to do.

TruthSweet · 28/11/2011 20:49

Sorry that was a really Spartan reply!

Do you have to take the meds to prevent a flare up or to treat one? If it's to treat one (and the drugs are incompatible with bfing) you could pump'n'dump (if you were well enough to) and then reintroduce bfing when the meds were out of your system if you wanted to.

Having said that, some meds are a total no-no for pg but are fine in bfing due to the differing way in which the could get into the baby so it may be that the drugs are not suitable for pg but are ok for bfing (sorry if I have missed the bit where you explained that)

Original poster

teddiegoestopeckham · 28/11/2011 20:53

thanks truth but the type of meds I have to take are very specific (I have other complications that mean the meds i'm on are my only real option) and I work in the drug related industry and knowing what is in them it isnt getting anyway near any DCs. they are very very nasty.
So it is all or nothing really and that is what is making me torn.

OP posts:

Tmesis · 28/11/2011 21:01

Do you get any warning of the start of a flare-up? If so, you could breastfeed and make sure that your baby gets used to taking a bottle early on, so that you could switch later on if you needed to (and if you are someone who has abundant supply and finds it easy to pump, you might be able to build up a freezer stash so that you could still give some breastmilk during a short flare-up).

No one would blame you for not breastfeeding under the circumstances, though (but even if you don't plan to do it long-term, maybe try the first few days so that your baby gets the benefit of the colostrum).

But do check the meds with the helpline to make sure that they really are incompatible with breastfeeding first -- sometimes doctors are over-cautious or just badly informed.

newmum001 · 28/11/2011 21:02

I have no real advice sorry but didn't want to read and run! Without knowing much about your condition it's a bit hard to comment but I'd say you being healthy enough to look after yiour baby is the main priority! All I can say is that if I were you I'd probably go back on the meds and bottle feed. I hope you don't beat yourself up too much trying to decide, it must be a very difficult position for you to be in.

newmum001 · 28/11/2011 21:02

Tmesis · 28/11/2011 21:03

(Cross-posted there on the "check the meds" point)

TruthSweet · 28/11/2011 21:17

Do the drugs actually pass into bm?

As I am sure you know some meds don't pass at all into bm due to molecular size or even if they do pass they are unable to be digested as they are IV/IM only meds (there are other reasons drugs may not pass into bm or only pass in virtually undetectable levels of course).

It really is a very personal decision though and a lot does hinge on how you feel, so it's difficult to know what to say really. I wish you all the best with your new baby and hope you enjoy the ride

Original poster

teddiegoestopeckham · 28/11/2011 23:13

Thanks - some of the compounds wouldnt pass in bm (but would pass though during pregnancy) but equally some of the other compounds would pass though bm.

I know when i am getting flare up but docs cant (even after all this time) if the hints on my body come before or after internal flare up. if that makes sense.

I know it is personal and all that shit but I really dont know what to do. And I also cant yo-yo with meds being pg is the first time i have been off them since 19. if i go back on them i'm back on them at least for 18mnth (think docs say about 9-12mnth but knowing the chemistry behind them......)

OP posts:

BelleStar · 29/11/2011 11:57

I have had a similar situation - coming off meds a year before TTC and being very aware that my condition was likely to flare up again as soon as baby was born and bf on meds not a possibility. Pregnancy took away all my symptoms and I'd been feeling great. Baby was born at the beginning of September and I have amazingly been bf for the last 11 weeks. But as Tmesis said I made sure that from early on (4 weeks) my baby had at least one feed of expressed breast milk from a bottle so that I could quickly transition to bottle in the event of a flare up. About 4 weeks ago I noticed the signs of my condition worsening so I've changed the bottle from expressed milk to formula. Baby now has a couple of bottle feeds and the rest breast each day, but we're ready to go with the bottle only when I feel like I need to take the meds (which I'm feeling is going to be in a couple of weeks, so bringing in more bottle feeds gradually). I wasn't expecting to be able to breastfeed at all, and certainly not for longer than 4 - 6 weeks. And I prepared myself mentally for that whilst I was pregnant, and spoke to friends and family about it so that I felt people understood the situation (not that anyone would judge me for not bf but I wanted people to know!).

What does the research say about your particular meds and the number of hours it takes to stop getting into your milk (if any)? I have been able to take a very low dose of one particular drug as the recorded presence of drug found in baby is nil if it's taken 4 hours before a feed - so I take it after the last breastfeed I do when I know the next feed is a bottle. You might be able to do something like that and work out a bit of a rota depending on when you take your meds.

Sorry for lengthy post!

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