Breastfeeding and lupus

[ruta74]

Hello all!

There are enough information about pregnancy and lupus but I havent found much about breastfeeding and lupus. I am interested what is the "relation" there in general.

I have been wondering that if they say that in usual case (I mean for healthy people) a baby gets all the antibodies and immunity he\she needs from breastmilk for the early months in life. But if lupus is exactly an immunity disease - does it mean that for our lupus mom?s babies it is different?
Is my milk somehow less worthy?

Today I faced another doctor who couldnt give me any answers about my questions in this area... style_emoticons/<#EMO_DIR#>/doh.gif

The thing is that i have been breastfeeding my baby for two months now and it is still painful. Maybe it is also connected to my disease - my breasts are just so tender?
Should I go on suffering -because they say the pain will go away...
Or isnt my milk any good anyway, so I could switch it to the breastmilk replacement?

What have you lupus moms done?
For how long have you breastfed if at all?
Or do I create a pseudo-problem here...

Regards,
confused me

[deberinpol]

Hello Confused me,

Let me first start by saying that I am so sorry that the doc's have not been helpful. I am by no means an expert in this area. But I do work in the NICU (means I work with tiny babies) Again not an expert and you should seek medical advice from your doc's. But I will say that in my experience, lupus mothers can breastfed and all the antibodies that a mother without lupus gives their baby, you give too!

As far as the pain you are having, maybe you should ask if your doc has a lactation consultant he/she can refer you to! Lactation consultants can be much more helpful then the docs because that is their area of expertise.

Good luck!

Erin

[weedhopper]

Sorry to hear your not getting any answers from the dr.s. Grrrr. This I'm sure is already confusing enough for you with the dr.s not knowing what to do either. Contacting a lactation consultant is a good idea, maybe they'd have expeirence with this. Not sure if it'd help any, but you could look up www.Lalecheleague.org they may have some information. Good luck.

[confused1]

Hi, I know nothing about Lupus specifically and breastfeeding, but I was a La Leche League leader for four years and breastfed my own two boys till they were 2. Breastfeeding shouldn't be painful. The problem may be something as simple as positioning the baby before nursing. Or it may be something to do with the way your babe sucks. Anyway, do contact your local La Leche League chapter. That will put you in touch with other moms who are also nursing babies. That's a good source of support and comfort and information. But first get out the phone book and find a breastfeeding consultant in your area. Some insurance companies will pay for consultations, but most don't. No matter, it will be the best money you ever spent. Breastfeeding is the best foundation any baby will ever get. Research has shown so many benefits both to baby and to mom from sustained nursing. And it has been shown that breastfeeding creates the strongest possible immune system. That's a great gift to give your baby.

Good luck,
Sunny

[cath]

Dear Ruta,

Hi!

Good on you for sticking with the breast feeding.

Your milk is just as good as someone without Lupus, so don't feel less worthy!

Where is the pain coming from? Is it the nipples and if so can you see any damage, white spots etc?
Is it the breast tissue itself an if so is it painful lumps, red patches, deep pain at the base of your chest?

Does it just come at the start of the feed or last the whole feed? Is it relieved partially by feeding but then builds up again before the nedxt feed?

There are a number of possibilities each with slighly different scenarios, hence the large number of questions!
Like Sunny said however, the most likely problem is attachment, that is how your baby is sucking on the breast. Poor attachment will cause nipple trauma and result in less effective emptying of all lobes of the breast. Incomplete emptying causes that painful overful feeling and can lead to mastitis if it isn't resolved.

Getting a better technique is difficult to explain over the internet - you need hands on guidance, so I'd try and see who provides breast feeding help in your area.

A really good website for breastfeeding is www.babyfriendly.org

Anyone who is following the WHO/Unicef guidelines is basically on the right track. LaLeche are great, but i've no idea if they are in your country or not sorry!

Here are the basics:

Face your baby towards you so she doesn't have to twist her neck
Support her by the shoulders not her head so she can tilt her head back (the same way we do when we take a drink)
Line up her nose with your nipple (not the middle of her mouth)
Wait for her to gape (open her mouth really wide)
QUICKLY and firmly bring her forward to your breast, dont bring your breast to her!

The idea is that she should have a mouth full of breast tissue with the nipple at the back of her throat where it is not rubbing against her hard pallate and therfore doesn't get squashed.
Depending on how big her mouth is and how big your areola is, you probably won't see much of the areola anymore - it should mostly be in her mouth.
Sometimes it is a bit sore for a second or two, but this should go completely by the time you count to 10.

Pain throghout a feed is not normal. If it hurts, take her off and try again for better attachment. If you still have pain despite good attachment, consider thrush (candida) as a culprit. White cheesy spots in the baby's mouth can be a sign, along with burning deep chest pain during feeding. If baby has thrush, you will have it too and both of you need treating at the same time.

A baby who is well attached on the breast moves their whole jaw with sucking, not just the lips. Their cheecks look rounded, not hollowed in. They relax completely. A baby who is feeding easily will usually decide for herself when she has fed enough and whether she wants the second breast as well or not.

If you feel that for whatever reason attachment is not going well and that your breasts are geting overful with stale milk, as well as working to get the attachment better, you might ned to express for a while. You can do this by hand or with a pump. Under the shower is a good place to try hand expression. Massage gently from the outer breast towards the nipple by rolling the knuckles of your hand over the breast, expecially the lumpy areas. Try not to rub the skin as this will become painful. By sweezing the breast tissue about on the edge of the areola with two fingers placed opposite each other (in a c shape), you will be able to express the milk off.

Expressed milk is fine to give the baby so long as you collect it in a sterile container and refigerate it (up to 48 hrs or 3 months in the freezer).

Ok I'll stop now as this is probably way too much info style_emoticons/<#EMO_DIR#>/scaredy.gif style_emoticons/<#EMO_DIR#>/wub.gif style_emoticons/<#EMO_DIR#>/hairstand.gif

All the best style_emoticons/<#EMO_DIR#>/thumbs-up.gif

X C X

[Clare.T]

Ruta I am sorry you are having such struggles and getting so little advice from your doctors.

The situation about breast feeding and Plaquenil seems to be that the FDA doesn't disapprove but "take your doctor's advice" which isn't much help to you.

By the same token nobody on a forum can assure you that it will be alright and personal experience isn't a good enough basis to make such a decision, or I should say it wouldn't be enough for me.

'Best' advice can only be not to take it while breast feeding, then you can never reproach yourself. You would be worried all the time.

I hope you can manage to reduce the pain by the expert advice you have been given. Apart from not being 'normal' ( and thus a sign that something is not right , whatever it is ) it can't be an emotionally satisfying experience for either of you. The baby has no choice.

Expressing the milk might be a feasible option for you

The most important thing is that you both thrive and are as well as possible emotionally and physically.
Unfortunately many women are made to feel failures as mothers if they do not breast feed. The impression is even often given that is a duty to breast feed as long as possible - that's fine if it suits you but you don't get any medals for it and the child will never turn around and thank you.

As mothers we can each only do our individual best. in the circumstances we find ourselves This is true of every aspect of parenting.

Maybe the best thing for you both at this stage is for you to focus on your health which might be far more at risk if your lupus goes untreated, with long term consequences as regards your ability to give your child
your best.

It is OK to decide breast feeding is not in either of your best interests, disappointing of course but the baby will be just fine and hey, if that's the worst that ever happens............ .

I must say I have a personal motive - my mother once proudly told me that she had been so determined to breastfeed me that she persisted for the full 9 months despite extreme pain and even bleeding. Thanks a bunch mum.
That explains a lot I thought, quite revolted.

All the best - do whatever seems right to you

Clare

[pnutts]

Hello Just wanted to add my two cents for whatever it's worth.

Since I have just had my second daughter, I was told it wouldn't be a problem to breastfeed if I wanted to.

I personally choose not to because of all the meds I'm on. Even though they told me that they don't pass through the millk I didn't want to take any chances. And this way others could feed my baby like grandma and daddy and I could get the extra rest I needed. style_emoticons/<#EMO_DIR#>/biggrin.gif

Cath

[cookie]

Hi,

My babygirl is 7 weeks now, so I had the same worries as you do not so long ago. My doc was very firm on the subject : no brestfeeding. Since I cannot seem to be without medication, he really prohibitited me from feeding. I really hated that and wanted to stop medication but it seemed that stopping would possibly be a greater risk for my girl than continuing and giving bottle-food.

Anyway, my daughter is a fantastic girl, brouhgt up on bottles and the most happy girl on the planet. I hope from the bottom of my heart that you can find the perfect way to feed your baby and feel good about it, because every mother should, no matter what you decide to do with nurture.

I wish you all the best, whatever that may be for you and your little one !!!

Cookie

[Alicia'n'2bugs]

I am currently breastfeeding my 15 month old daughter and have been taking plaquenil and prednisone since she was 2 months old and Imuran since she was 4 months old. I did a lot of research, talking with both my physician and my daughter's pediatrician and consulting the internet, literature, etc. I found that the benefits far outweigh the risks and I've felt very comfortable doing it. I am currently weaning my daughter so that I can begin Methotrexate which cannot be taken while breastfeeding.

Your milk is perfect for your baby! Lupus doesn't affect that. I would take the advice from the other ladies and contact the LLL and see if you can get some assitance since breastfeeding should not hurt, especially after 2 months!

Breastfeeding during this disease has been a saving grace for me. It makes me feel worth something, needed, and usefull. For all that I can't give my daughter in ways of energy, I can give her in the way of nutritian and comfort/bonding time.

Alicia

[Maia]

Hello,

Sorry I'm a little late but I just wanted to say a few things for future readers:

(1) Sore nipples can be caused by a lot of things and Dr. Jack Newman's all purpose nipple cream works
WHATEVER the problem is. I had problems until my daughter turned 2 months old too with pain: turns out
I had a breast yeast infection (deep pain with burning that got WORSE after feeding & Nystatin would not cure it beyond a week or two) and I also had recurrent staph infections of the nipple. Lupies are more prone to staph infections; and any breastfeeding mother is more prone to them. That cream WORKS WONDERS - cured both problems. It is NOT always just poor latch, but even if that is the problem the cream works for that too. It is prescription and all lactation consultants will know about it and you can search the web for it if your doctor is not familiar with it. Only a few pharmacies seem to be able to mix it up for you these days it seems.

(2) I am still breastfeeding and baby is over a year old. I went off all meds about a week before I delivered (was on Plaquenil and baby aspirin througout pregnancy), my doctor does not want me feeding while on Plaquenil even though the AAP ranks it as safe to take while breastfeeding as Tylenol (i.e. the grade/caution level is "B"; which is pretty much as good as it gets. I've been sick a lot after she went into daycare, but supposedly my suffering is not due to lupus but rather repeated infections with virus/bacteria. I guess my immune system is too sick with "real" stuff to have the time to attack itself. *semi-laugh*

Anyways, enjoy that baby!

[ruta74]

hello girls again!

I kind of promised to let you know what I have decided.

I took a big step and managed to go and visit a doctor in another country.
Got lots of new information and advices and ideas.

Namely I was reassured (one doc here in estonia told me the same at last) that Plaquenil is actually ok to take during breastfeeding. The % my baby gets it from the milk is not dangerous. He even showed me the underlined sentence from onne big-fat medicine book.
And especially in the situation where I desperately need the medication.

So I am back on Plaq and still feeding my baby. Especially because of the extremely painful start I really didnt want to quit now where I have no pain while breastfeeding anymore. It just passed, they say at last your nipples get used to it.
It actually took exactly two months while it was a total terror when my baby was sucking... uuuuhh.
But after reading lots of posts from special forums I realised that some of us just are the "lucky" ones who can experience the extreme "joys" of breastfeeding. And I was assured - it WILL go away!

Anyways what I wanted to let you know is that I still decided to go on with both - medicine and breastfeeding.
I also have one Fragmil injection a day for headaches. Too soon to say but I keep my fingers crossed it helps!

I hope my experience is a little help for some of you who you have to make a similar decision in the future.

Hope you and your wonderful babies are all okay!

Best wishes,
Ruta