ok so I just had a baby 2 mos. ago as some of you know. I've been breastfeeding him and have been having lots of pain. Ob and lactation consultant 1st thought I had a yeast infection and treated w/ several diff meds w/ no effect at all. Tried breast shields in between feedings thinking maybe it was irritation due to rubbing on my clothes no help either. I have read that certain ai diseases can mimic yeast infections in breastfeeding mothers but couldn't find much more on that. My ob and the lactation consultant feel they don't know enough about how sjs affects breastfeeding to really be helpful or even who to refer me to. Anyone know where I might find more info about this, or have any thoughts on the pain I've been having? All my symptoms from sjs have been in remission since becoming pregnant and have not come back since having the baby is this maybe the way they are manifesting right now?
I don't know, but I DO know that changing hormones can affect this and other diseases. Perhaps your pregnancy hormones are finally back to normal post delivery and you are feeling a change.
I don't know anything about breast feeding but my hats off to anyone who does it, your giving your baby a healthy start in life, nothing can replace mother's milk. If you have to discontinue due to health issues at least you tried.
Hi Lacey :)
I don't know either. I tried breastfeeding all 4 of my kids. I was successful with the last two - but not the first two. I fed my oldest for a month and then gave up. He just didn't seem to be getting enough. Looking with hindsight - he probably was and I was just feeling inadequate. I switched him from breast to bottle and he grew up OK. The health visitor said the first 6 weeks is the most important time to try to breast feed.
I have a friend who had a baby within the last year. She desperately wanted to breastfeed but had to give up eventually because she was just in too much pain.
Obviously go with what your health care professionals advise but if you are in a lot of pain - is it worth it? Babies are babies for such a short time. You want to enjoy your time with yours and not dread feeding times! Love is more important than where he gets his milk from.
Take care - Scottie :)
I tried doing it when my son was born and it was just way too painful. I have very cystic breasts which causes lots of pain. I feel (sometimes still feel) guilty about it because you are protecting your child by passing on your antibodies to ward off diseases that your body can fight and not your child (at least until they get their vaccines). That also brings a question to mind? What about the antibodies that come with this disease? Do you pass these too through breast milk? Never thought of that one before?
Congrats on the baby, Lacey! Breastfeeding can be trying (I have 3 boys that I nursed. I got mastitis with my 1st son and had to stop) and if you're in pain- no fun at all. Do you have a rheumy that you went to prior when you had SJS symptoms? I would think that a rheumy should have info on this or you could contact the national sjogrens organization for their guidance. I completely understand how you are feeling. You are wanting to do the best for your new little one, yet you are struggling with the pain and just what the heck is going on. Sending you a big hug. I hope you get some answers soon.
Good luck and hang in there,
Leslie
My niece could not breast feed since it was too painful for her as well. It was important for her to give her baby breast milk, so she used a breast bump instead. You could freeze and refridgerate the milk for future use. Hope this helps.
SusanL
Congratulations on the baby, and condolences on the pain. Sometimes breast pain has more to do with the baby than the mom, they may have a different type of "latch" that is increasingly uncomfortable for mom, and in that case, the pumping and feeding seems to work well. I'm sure that is you've been seeing a lactation consultant, that has probably been looked at, but it might be worth a second check.
Since SjS can cause "glandular pain" and lactating breasts are essentially glands, there could be a connection, but I don't recall any actual research on the subject.
Since the maximum antibodies seem to be passed within the first 6 weeks (the most in the colostrum in the first few days) you've already given your son a great start from that point of view.
I did very well with my first two, but could not do the 3rd, it was incredibly painful. :-[
Always felt guilty, but he's 10 now and still loves me! LOL ;D
Hi Lacey
So good to hear from you! It sounds to me as though you want to continue breastfeeding, and when it works well it's the most amazing thing for baby and mum. It can also be less exhausting than bottle feeding although it doesn't always seem that way!
I agree with Linda that breastfeeding problems often have more to do with baby than mum. Is he latching on correctly? Sometimes babies get a bit 'lazy' and just clamp on for a quick drink, and don't do the work that gets the full feed. In other words they get the thinnger fore milk but not the nutrition rich hind milk. So they end up cranky and wanting to feed more and more often. Then you get sore. Can your lactation consultant/nurse check to see how he's feeding?
The other thought I had is that it could be connected to SjS dryness. Are you drinking enough water and other fluids? You need so much anyway with SjS, and with feeding you need masses. It's worth checking out yeast infections because babies can get thrush in their mouths and then it gets passed back and forth between mum and baby. It's easily treated and doesn't cause long term problems.
So good to hear that your SjS symptoms are still in remission. Take good care of yourself.
Thinking of you - Chickpea
Congratulations on your new baby Lacey!
Reading your note has brought back some memories of breastfeeding my twins. My babies had oral thrush and I had the yeast infection of my nipples. It was frustrating because I had no lactation consultant and my doctors had no idea how to treat me. I was able to get a prescription for the babies and my gyne told me to use an over the counter cream for athletes foot to treat my nipples. I just had to make sure it was washed off before breastfeeding. The other bit of advice was to try to expose my nipples to as much air as possible (easier said than done). Fortunately it all passed and my kids are now 17.
If you think it is a problem with the baby latching on, pumping might be helpful. One of the nurses also told me that if I was feeling exhausted that there would be no harm in taking off for a day or two and feeding the babies formula for that time.
I wish you well.
Hi Lacy,
This is a very hard on moms, you are doing a great job :)
I nursed my 4 babies, and the first was horrific! I was in so much pain when he latched on that I cried. At 4 months I gave up, it was just too painful. Turns out it was because of his frenulum, his tongue was basically stuck to the bottom of his mouth. I had consulted all the "right" people about the pain, but at that time (1998) they had stopped clipping babies frenulums (they are back to doing it again). When my son was 8 he had the surgery, and now can touch his nose with his tongue! My other 3 babies never really caused me pain, and I nursed them for about 1 year. I did get a few infections with each child, but antibiotics took care of them.
I had to pump with my second baby for about 4 weeks because she was a premie, and if you do end up pumping, I highly recommend renting a good pump.
I hope you figure out how to ease your pain soon, and that you are able to enjoy your time feeding.
Many warm hugs to you dear!
Kellie
Ithey've ruled out yeast infection so that is not it. i've tried pumping but that is more hassell than it's worth. It doesn't help w/ the pain not to mention the baby refuses to take a bottle from me and all the time it takes to pump. I saw a lactation consultant and he is latching on properly. I have no idea what else to try other than to think it is related to sjs somehow but thanks for all the adivce and encouragement.
Hi
I'm curious to know the answer to your question also. I am now well and truly through the breast-feeding phase but had terrible trouble with both my girls!. The pain was beyond belief. I consulted a lactation professional but was unable to maintain it after 4 months with the 2nd. I went for 8 months with the first.
Firstly both my kids had reflux. Both would go on the breast but keep pulling off so they never seemed to get a long, good feed. My first kid never put on much weight which was a source of on-going worry to me. I think they kept pulling off because of the reflux. I got Mastitis twice with the 2nd and once with the first along with nipple that was literally cut and ozing pus so I had to go on antibiotics...Both of them just simply refused the breast one day and screamed and cried I guess because they were hungry. It was a hard road and I felt so much guilt when I did give up. I couldn't understand why I never got it right. Both are happy, rather thin kids now but I think that is in their genes.
If I had to do it all again I would go on to the bottle if necessary after 2months and drop the guilt. I tried my best and it didn't work out. I just wasn't enjoying myself and feeding became a time of intense anxiety. By the way I had plenty of milk but I sometimes wonder if the glands in the nipple or breast were somehow affected by SS and may have contributed to my problems. I wish you all the best with breastfeeding but if it becomes a painful and dreaded chore then I would change to the bottle without any guilt.
Let us know if you find out anything regarding the relationship between breastfeeding difficulties and SS. I am very curious...
Well, I know you might not want to do this but in my day most babies were bottle fed. I was bottle fed and was not a sickly baby at all and ended up with a high IQ so don't let them make feel guilty if you decide to bottle feed instead. Your baby may not like a bottle at first, but if it gets hungry enough will learn. Lesley
Lacey, Good for you for doing the nursing. I didn't nurse the first one, nursed the 2nd one for 2 mons and then had to go back to work. No pumping breast back then in the 60's. The third one I nursed but he got so hungry that I had to give up and go to the bottle. I think it was the sjogrens as I just didn't make enough milk and didn't even get very engored with him.
As far as pain---ahhh, it was horrible and I always had to lie down to nurse and wiggle my toes while I nursed. I did not have the yeast though. I have to tell you that the pumping the breasts and bottle feeding is the best of both worlds. You are not so tied down this way as you can leave the baby with someone and go out for dinner with your hubby. It is possible that your baby also has some yeast and you two are passing it back and forth.
My DIL did the pumping as she worked and nursed in the morning before work and 2 times before bed. She had so much milk that she had enough breast milk in freezer for 6 months. It is also much cheaper to nurse and the baby gets all the nutrition from the mother. Hope you can find a way to make this work. If you can't don't beat yourself over the head. Most of us were raised on a bottle of formula. In the old days if mom couldn't nurse and baby couldn't suck good they would soak a rag in cows milk and drip the milk into the babies mouth or let the baby suck. Also, in the old days they would put sugar in a piece of cloth and tie it shut and let the baby suck on this when they were fussy. This was called a "sugar tit". This is just some superfluous information that my deceased mom told me many years ago. She was born in 1906. Irish ;D
Irish - I thought I was the only one who had to wiggle my toes when feeding!! I fed all 5 with varying degrees of success. The worst problem was persuading the youngest 2 to stop at 2!! It is the best for the baby, but only if it's also best for mum. Work, family, health all have to fit in too and like you say, we were probably all bottle fed and don't know any difference!
Hope its going easier for you now Lacey, and that you get the occasional time for yourself too XX Ailsa
thanks for all the encouragement ladies. the pain is getting better. it seems to come and go some feedings hurt some don't. so hopefully it will keep getting better.
I'm pretty sure it is related to my sjs, b/c like my prev. symptoms the pain seems to fluctuate w/ my hormones. I don't have the time or the resources to really try and find studies about sjs and breastfeeding but there really doesn't seem to be too much out there.
For those of you trying to switch from breast to bottle---I found(many years ago) that the Playtex Nursers were the best way to go. These are the bottles that you used a device to insert a plastic bag into the plastic bottle. The nipple was soft enough to conform to the babies sucking unlike those old fashioned nipples that are so hard for babies to adjust to. Irish ;D
P.S. I guess they still make this bottle system though it may have a few changes.
Lacey, CONGRATS on your baby! I have an almost 9 month old baby girl now who is still exclusively breastfed and let me tell you, it was PURE heck the first 2 months of her life. She did have latch issues at first which we worked on, I also dealt with thrush but my biggest complaint was the initial latch on pain (felt like shards of glass cutting my nips up) and letdown (which STILL feels like a boobie charlie horse). Are you having pain with letdown at all? When baby unlatches what color is your nipple? If you have a white or purple nipple then you have been blessed with the OH-SO-LOVELY (im dripping sarcasm) Reynaud's Phenomenon. It is most common in people with AI diseases. Its basically blood vessel constriction that occurs while nursing. Then after the baby finishes feeding and the blood returns to the nipples, it becomes all sorts of painful. You can take Procardia for it. If you want to try something more natural, there have been GREAT results with taking Vit B6 in a low dose a few times a day but not too much because it will dry up the milk if you take too much.
ALso with baby's latch, make sure both top and bottom lips are FLARED out. mine would latch on correctly at first (that took a lot of work) but thru the feed would gradually bring her lips in and make more of a clamp on me which hurt like heck. Another trick that nobody told me even though I had several LCs helping me out was when you go to latch baby on, dont aim the nipple into the center of the mouth, aim for the roof. THAT was my saving grace. once i started doing that the pain practically dimished within a few days. My baby had a good latch but I was aiming wrong. I did several rounds of diflucan which didn't help and Reynauds mimics thrush in pain so I would try B6 or Procardia if you think that is the kind of pain you are having. I havent had ANY pain since my baby was 2 months old with the exception of the letdown charliehorses. It felt like pins and needles with my son but he never 'successfully' breastfed but this time I was determined to get it right and I stuck it out and it has been SOOOOOOOOOOOOO worth it. I did a TON of research on breastfeeding problems related to autoimmune diseases and sjogrens and if you have any other questions, feel free to PM me. I will be glad to share any info that I can with you.
Michelle
ps, my hubby just came in and reminded me another trick that helped. Coconut oil. I applied it to my nipples because it kills yeast and it moisturizes the dry sensitive skin too and it actually FORCED her into the correct latch because she couldnt do the clamp thing with her lips. That is how she learned the correct way to latch. Its also safe for babies to ingest so no need to wash it off. There was also a study that moms can take it (good for AI too) but it increases the antiviral properties in breastmilk and keeps babies even MORE protected from getting sick.