Seeking problem-solvers: I am at a dead end with BF pain and need your help! What should I do next?

[cww]

Hi everyone,
I posted in another thread originally about my BF pain, but after months of seeing LCs and a doc that specializing in BF problems, I am at an impass. I was hoping to get advice about what to do next from any of you who have gone through something similar... (Warning: Incredibly long text follows - if you decide to read on, thanks in advance!)

Basic History of the Pain:

From the first second that my LO latched on, it hurt fairly strongly - like needles going through my milk ducts in the nipple/aureola area. I tried repeatedly adjusting her latch and got help from lactation nurses in the birth center, but it still hurt. It's not that it got sore after feeding for a while or after a couple of feeds, but rather that it hurt from the first second that she latched on for the very first time and the pain continued for every second that she sucked.

After feeding her for only a day or so, it became excruciatingly painful - like knives and fire every time she latched on, and pain continued throughout the feed (although it would get a little bit less after the latch on, but it was still excruciating). It got to the point where I would avoid nursing her unless it was absolutely clear that she was really hungry because I just couldn't bear the pain of having to nurse her again. In between nursing it would also hurt (although less than when she was actually feeding), with lots of burning and sensitivity. I very quickly got bloody scabs on both nipples.

I went to an LC when she was only two days old b/c the pain was so bad, and then followed up with another LC when she was 5 days old. None of their help with latching changed the pain at all.

When my LO was about 10 days old, I started using a nipple shield which reduced the pain a lot, and quickly found that if I tried to go without it even once, the really excruciating pain would come back within a feed or two. With the nipple shield I still have pain, but it is mostly bearable (it varies some from day-to-day).

I started pumping about once per day at about 4 weeks, and the pumping hurts as well. I have breast shields for the pump that are big enough - the regular ones are definitely big enough, and I have even been using the larger size, with no noticiable effect. I find it hurts even if I keep it on the lower settings (like 3-4 out of 10). The BF doc thinks that any pain caused while using the pump must be from vasospasms (but it is hard for me to see the color of the nipple inside the pump).

In addition, my let-down hurts - it is again that pain that feels like needles going through the areola/nipple milk ducts. The BF doc says that this would be vasospasm pain, but when I look the nipple doesn't look white.

What has been diagnosed and/or treated:

• Vasospasms diagnosed and currently undergoing treatment: I definitely have vasospasms where my nipple will burn in a cold kind of way and turn white, but I'm not sure that this is the original source of the pain. While I get vasospasms both during and after feeding, the worst and primary pain is during feeding, and it doesn't always feel like a vasospasm. I am currently taking nifedipine to treat this, and it has reduced the incidence of vasospasm, but after 1 week on the medication, I am still getting them at least some of the time, the pain during feeding has actually gotten worse, and the medication gives me migraines (which can be reduced a bit by taking Advil prescription strength along with the medication, before the headache onset).

• Inflamed duct diagnosed and treated: At one point I did have an inflamed duct (aka bleb, milk blister), which was similar to the pain I currently have but even more painful (even with the nipple shield). It went away after about a week of Advil and deliberately puncturing the blister on the nipple and using alcohol to clean it. Several times I have taken prescription strength advil for anywhere from 4-14 days.

• Plugged ducts diagnosed and treated: I think this is unrelated to the nipple pain, but I have had several plugged ducts. A day of Advil and moist heat before pumping have cured each of them within 24h.

• Bacterial infection diagnosed and treated: I did have a culture for bacteria come back positive with an usual strain, but the culture that we redid last week (of both my nipple with a dab of milk and the LO's mouth) came back negative. I did a bactrim ointment initially before anything was diagnosed, and then did a clindamycin ointment in response to the culture.

  My chiropractor also gave me poke root orally to try, to see if it could treat the BF pain, and instead it make me vomit repeatedly for a full afternoon/evening.

• Thrush suspected and treated repeatedly: I had IV antibiotics during labor b/c I was strep B positive (and I've often had bad reactions to antibiotics). I aslo have a history of yeast difficulties. My nipples are fairly reddish pink, but have no other obvious signs of thrush. LO has had no signs of oral thrush, but did have a yeasty diaper rash at one point that went away with oral diflucan. I have tried the following creams topically: Nystatin, clotrimazole, miconazole. Both I and the LO also went through a 2 week Diflufcan oral treatment. None of my symptoms changed at all during any of these treatments. I don't eat a lot of sugar. I also tried some other things (see all purpose remedies below).

• All purpose topical remedies that I tried: Motherlove diaper rash and thrush cream, Earth Mama Angel Baby nipple balm, vinegar rinses, probiotics on the breast, probiotics taken orally (4 different kinds taken all throughout pregnancy and BFing), grapefruit seed extract topically on the nipple, Mylanta on the nipple, Bactr/Bet-val/Nysta/Clot ointment prescribed by midwives, Nystat triam oint/Lamisil ointment prescribed by BF doc.

• Baby weight gain issues have come and gone: The first week my LO gained 10 oz, but for the 5 weeks after that, she only gained an oz per week. After that I started pumping extra milk in the am and just feeding her an extra 4 oz at night, and since then she has averaged 5 oz per week. My supply is high - I got 30 oz when I pumped exclusively for a 24 h period to judge supply, so the theory is that the LO perhaps does not nurse so effectively? The LC doc suspects some kind of acid reflux, but the pediatrician says this is not likely unless she is vomiting a lot, which she is not. When she does feed, she wants to stay on the breast for over an hour (but if I keep trying to pull her off before then, I can often get her off closer to 30-45 minutes where she seems happy and full after a minute or less of crying b/c of being removed from the breast).

• Tongue-tie still a possibility? The two LCs who looked at her tongue said that they didn't see an obvious tongue tie, but that I should have someone more specialized see it. The BF doc says that she does not have tongue tie. She can stick her tongue out quite far, but it does curl up around the front and the edges when she cries. Since the BF doc specializes in this and this is all she does all day, I feel like if I can't trust her opinion, who can I trust? But maybe since the pain is still there, I should try to find someone else for a second opinion?

• Baby currently has red rash on cheeks and neck, concetrated where the most milk touches her: This has just popped up over the last few weeks. It doesn't look like a bacterial infection since it doesn't ooze at all, and it doesn't look like an allergic reaction since it doesn't seem to itch or bother her. Could this be evidence of something else in the milk that could explain our issues...?

Where to go from here?

The LC doc doesn't really have any more ideas about what to do. She presented me with some options, and told me to call her back when I decide what I want to do next. Here are the options she presented me with:

• See another BF doc 2-3 hours away by train? She has a colleague who has been practicing forever whom she says that I could see for a second opinion, but its a long trip via train - I would lose a whole day and have to travel with the baby. She doesn't have a ton of confidence that this doc would have any better answers, but she presented it as an option.

• See a dermatologist? She said I could see a dermatologist and see if they can do a more invasive culture of some kind, or if they have other ideas. Since my experience with dermatologists has been that they can only diagnose what they can see (and they don't necessarily do that all that accurately), and since I have no obviously problems with my nipples (other than perhaps some redness), I'm not hugely hopeful about this, although I could of course pursue this while trying other options. Also, the pain doesn't feel purely topical. It's not shooting deep into the breast or anything, but it feels like pain in the milk ducts inside the nipple/aureola, not just rubbing on the skin itself (although the skin itself can also be a little sensitive).

• Maybe I have a yeast infection that is too deeply imbedded in the skin to be affected by topical solutions and which is resistant to diflucan? If we think this is the case, we'd need to move on to other oral antifungals which would require liver function tests to make sure that they aren't causing elevated liver enzymes. I'm not super comfortable with this, especially since there is no way to definitively diagnose yeast and I don't have clear or classic symptoms. The fact that it hurt right away after birth with the very first latch, and the fact that the really bad pain comes back after even just 5-10 minutes of nursing without the nipple shield seem to go against this, since apparently yeast pain usually crops up after several feedings, and not so instanteously.

• Maybe I have a bacterial infection that is not showing up on the culture? Apparently there is another doctor who thinks that many pain syndromes are caused by undiagnosed staph infections; the BF doc doesn't put a lot of stock in this theory, but would be willing to give it a try if I want to try it out. So I could try some kind of oral antibiotics for anywhere from 2-6 weeks. However, I don't respond well to antibiotics in general. I'm allergic to penicillin and tetracycline antibiotics, and I can't take clindamycian b/c of previous pseudomebraeous colitis reaction. I also tend to get month-long bouts of diarrhea after taking antibiotics, so I'm not keen on taking them unnecessarily.

• Try a few other over-the-counter treatments? I could try gentian violet (even though the yeast diagnosis is iffy and topical stuff hasn't make even a tiny bit of difference in symptoms), and/or I could try taking grapefruit seed extract orally (for bacterial or yeast issues) and see if it helps at all. The BF doc doesn't have a lot of faith that either will make a big difference, but there is little risk to trying either one of these (except that gentian violet seems to be very, very messy).

• Could I still have a bunch of non-visible inflamed ducts in both breasts? Apparently it is possible to have inflamed ducts that don't have the visible milk blister on the nipple. If this is the case, the way to improve them is to take Advil at prescription strength and to exclusively pump for 4-5 days, and then to gradually put the baby back on the breast, adding back one feeding per day. I could try this, but would I really have had an inflamed duct from the first moment of BFing? Or is it possible that something else cause that inital pain, and even though it feels the same as my current pain, the current pain is really just lingering inflamed ducts which resulted originally from some other trauma that is now resolved? I really hate pumping, as that is also painful (and horrible for night feedings), in addition to being incredibly inconvenient (I end up stuck permanently in the apartment), so I hate to try this if there is little chance it will help. It also makes me nervous to take the LO completely off the breast for days on end - if she does have trouble feeding efficiently from the breast, then what would this do to her BFing? However, if it were the only way to cure the pain, I would absolutely do it.

• Should I go looking for someone else (or press my current BF doc more firmly) to look again at the possibility of tongue tie or other anatomical issues in the baby's mouth? As I explained above, I'm not sure if this is an issue at all, but since nothing else is working, I'm wondering if this could be the hidden problem...

That's everything I can think of that might be relevant. Thanks for reading this marathon post through to the end!!! Thanks in advance to any of you who took time to read this and/or who have any suggestions for what to do next. :)

[kavamamakava]

has no one mentioned raynauds?

[PatioGardener]

Originally Posted by kavamamakava 

has no one mentioned raynauds?

aka vasospasms.

I'd look for a tongue-tie specialist if I were in your shoes. I'm so sorry you are going through this!
 

[hmgarnett]

Will she stick out her tongue? My LO wasn't tongue tied but was a tongue sucker and we had to spend weeks coaxing her to stick her tongue out. It took multiple LCs to figure that out...Good luck!

[cww]

They have not used that word, but I assume that is what the BF doc means when she talks about vasospasm being the primary rather than secondary cause of the pain. I'm already on nifedipine (1 week so far), and that hasn't relieved the pain while feeding or pumping or during letdown. It does seem to have reduced the number of random vasospasms that I get while not feeding. I've also used ibuprofen and worked on keeping the breasts warm all the time, but none of this stopped the pain, just reduced it temporarily. If it is Reynaud's syndrome, then I'm not sure what else I can try... Does anyone know of other possible treatments for Reynaud's?

[kavamamakava]

I do not have personal experience but I have heard of people treating it with magnesium, b vitamins, niacin and EPO. 

[cww]

Thanks for the reply! I am already on high doses of Magnesium/Calcium and B vitamins (the BF doc did mention this earlier on, I had forgotten) - I've been taking these for years. I'm not currently on EPO, but I am taking black currant oil (and fish oil), which is supposed to be similar. I could try EPO, though, as I have taken that in the past, prior to pregnancy.

[kavamamakava]

i do think black currant is similar to EPO?

[ShwarmaQueen]

Posterior tongue tie is often overlooked as it doesn't have the same appearance as classic tt. Also, has her palate been checked?

[katelove]

Is is possible to see a speech pathologist who specialises in breastfeeding? I had a similar experience to you - excruciating pain, damaged nipples, thrush, dermatitis from all the other treatments - turns out that J was bunching her tongue at the back of her mouth which pushed my nipple forward. From the outside, her latch looked perfect. I saw two LCs and, while both were very helpful, neither knew that this was a possibility. I was given some simple exercises to do with her to get her tongue forward and... problem solved!

[SubliminalDarkness]

I second posterior tongue-tie. Or what about palate issues? My son has a bubble palate, which means when he nurses, he forces my nipple up at a 90 degree angle into the roof of his mouth. Hurts like heck, but is unfortunately unresolvable. But at least it helps to know why it's happening, even if it can't be fixed. 

[gemasita]

Isn't NYC where the doctor who discovered posterior tt lives?  I have known people who traveled to NYC by plane to get the posterior tt looked at and clipped.  Luckily, that doctor trained some others throughout the country, including in my area, so we got that looked at early on too (but DS didn't have it).

Also, has anyone cultured your milk, not just your skin?  There is a study that I mentioned in another thread down here at UNC-Chapel Hill in NC where they are looking at unresolved nipple pain to see if there is anything different about these mothers' milk.  Maybe you can call them and at least talk with them?  I'm doing the study in a few days by going there but maybe they would talk with you by phone?  You may not have to be local to participate, not sure.  919-966-3428, Diane Asbill, RN, IBCLC.  The doctor is Dr. Stuebe.

I am still in pain too!  How old is your LO again?

[cww]

Thanks for the replies, everyone. 

katelove, thanks for sharing your experience.  I did some googling and then did what the dr sears website recommended to check tongue position, and pulled her lower lip back while she was feeding - when I do that, I can see that her tongue is definitely coming out, I think over her gum line.  So at least it seems I have ruled out then having the same issue as you?  It's too bad, since doing a few simple exercises certainly would help things. 

gemasita, I'm not sure about the posterior tongue tie doc, but I will definitely look into that - if they are in NYC, then I should be able to find them.  When they did the nipple skin culture, they did add a drop of milk to it, so I assume that anything in the milk should have shown up in that?  Thanks so much for the contact info for the study near you!  My LO is a few days shy of 3 months now.  I'm sorry to hear that you are still in pain, too. :(  I hope we both find solutions soon. 

ShwarmaQueen and subliminaldarkness, I didn't ask the doctor directly about posterior vs regular tongue tie or about the palate.  I had assumed that she would think to check for this since BF problems are all that she does, but of course you never know.  For months now I have occasionally looked at pictures online, trying to revisit this question of tongue tie.  She is able to stick her tongue out of her mouth over her lower lip, but she cannot lift her tongue very far towards the roof of her mouth.  Since she does seem to be getting the tongue over her gums when she eats, though (which I checked by pulling her lower lip back while she sucks), I'm wondering if it matters even if her tongue is restricted from moving up?  I don't know exactly how the tongue could be causing injury...

Last night with some googling, I found the following link, which includes an infant with tongue tie and a bubble palate, which I think actually does look a bit like her mouth:  http://www.breastfeedingmaterials.com/ask-barbara-kay/biting-high-palate-poor-feeding-in-37-weeker. I took some photos of her crying this morning and have posted them below, in case anyone has any ideas about whether this is something I should pursue.  If it is an issue, I can ask the BF doctor about it and see if she can refer me to someone, but generally, what kind of doc would I be looking for?  I've seen references to speech pathologists and dentists (and I know my current BF doc regularly snips tongue-tied patients...?). 

Here is the highest she seems to be able to lift her tongue (it doesn't reach the top gums ever):

Often her tongue seems to life asymmetrically, like below, always with the right side higher.  You can also see the palate in this picture:

In this picture you can see the palate a bit better:

Sorry for the picture quality - her skin looks really dreadful, and you can see unpleasantly up her nose - poor thing, she looks so much better in person!

Thanks to all of you for taking the time to try to help me out!

[~~Sarah~~]

 I would be suspicious of a high palate and posterior tongue tie too. Has anyone mentioned lip tie? can she do the "fish lips" properly? I would take the baby to see a body-worker of some sort - cranio-sacral specialist or osteopath, maybe even a chiropractor. 

But frankly, with everything you are describing I think you are likely battling a few problems still. Have you considered being followed by a homeopath? They can take all of your strange symptoms and find a remedy for it.

good luck and hang in there.

[gemasita]

I can't remember exactly, but I do think that the baby not being able to lift her tongue very high is a symptom of posterior tt vs regular tt.  Seems suspicious to me.

The doctor you would be looking for is an Ear, Nose, and Throat doctor (ENT).  At least that's who we went to down here who was trained in posterior tt by the doc in NY.

[GoBecGo]

I think she has a tongue-tie.

When my LO nurses her tongue covers not only her gum but her lower lip.  It is clearly visible at the corners of her mouth.  She can lift it to her top lip too, even when crying.  I'm not sure about posterior tongue tie, i don't know enough about it, but if i were you i'd look for someone to snip her tongue tie.

The fact that you have pain + she isn't gaining well = milk transfer issue (i.e. not infection etc. - infection or thrush wouldn't prevent milk transfer, it just makes it really painful).  The fact that shields improve the pain (taking her tongue and what it's doing/not doing) out of the equation also makes me think it's a latch/tongue issue.

[PatioGardener]

Originally Posted by gemasita 

I can't remember exactly, but I do think that the baby not being able to lift her tongue very high is a symptom of posterior tt vs regular tt.  Seems suspicious to me.

Originally Posted by ~~Sarah~~ 

 I would be suspicious of a high palate and posterior tongue tie too.

yes to both of the above - very suspicious for posterior tt imo. No wonder you are in pain, Mama! Lifting the tongue to the roof of the mouth is just as important as getting it beyond the gum line. Ouch! Hope you can find someone to help you out asap!

[gemasita]

Maybe this is the guy?  http://kiddsteeth.com/articles.html  I thought he was an ENT though.  This guy is a dentist.  But pops up a lot when I google posterior tt and nyc.

[rielly]

The Dr. You need to see is definitely the one above, Dr. Kotlow, a pediatric dentist out of Albany. I live in NYC, had my DD's posterior tt released once by an ENT here (Dr. Dahl), and she didn't release enough, so I was still having lots, although not as much pain. I went to Albany last Thursday and it has made a world of difference already. Please feel free to contact me via PM if you'd like to discuss this further. My DD's tongue was asymmetrical just like yours. Other than that it appeared completely normal to everyone who looked at it except for the third LC we saw. Good luck!

[tracdeveau]

Unfortunately, I do not have any new ideas, but nonetheless, wanted to offer my support. My son is 10 wks old (first baby) and I've had some similar BF challenges- intense nipple pain, poor milk transfer, undiagnosed problems, etc... though latch appears okay. A high palate and subtle tongue tie  were also  suggested but never diagnosed and a swallow/feeding specialist was recommended. Over the past several weeks something has shifted and my pain is subsiding, though there's nothing different that I can point to as the solution.

Anyway, this being my first BF experience, I'm afraid I would have given up if it weren't for much needed support and reading posts like yours that renewed my motivation and helped me keep going...one difficult feeding at a time. Your dedication and Hard Work to give your baby the best despite the many obstacles and pain you've faced is inspiring! Keep up the great work!!