Seeking problem-solvers: I am at a dead end with BF pain and need your help! What should I do next? - Page 2

[cww]

Thanks again to all of you for you posts!

Sarah, no one has mentioned lip tie - I thought that her lips were correctly flared out, but looking carefully, it seems that while her mouth is open wide, only her bottom lip is really flared out - the top lip doesn't look abnormal, but it's definitely not as flared out as the bottom one. I did take her to see a chiropractor, but no improvement there. I'm not sure where to find a cranial sacral therapist, but could hunt around for references. I'm a bit leary of homeopathy b/c last week my chiro (who specializes in pregnant women), who also does homeopathy, gave me some poke root to try to treat the breast issues, and I ended up throwing up all evening. I also get really nervous about taking stuff while nursing - no one seems to be certain about exactly what is ok when nursing. The chiro seems to think that all homeopathy is not risky, but I feel that every thing I take, whether it is "natural" or not, should be pretty well researched beforehand. I could try hunting for another homeopath who specializes in pregnant/BFing women perhaps...

gemasita and reilly, I wrote to that doctor in Albany late yesterday and haven't heard back. I thought I would try calling in the morning if I haven't heard by then. I tried calling the BF doc here and her message says she is on vacation for the next ten days (and she never mentioned this when we talked last - ug!), so I wasn't able to ask her about the tongue tie/palate/lip as possible issues.

GoBecGo and PatioGardener, thanks for sharing your opinion. The posts of everyone here have made me determined to see someone who really specializes in tongue/palate/lip issues, whereas when I started I really didn't think that these things could really be an issue with her.

tracdeveau, thanks for saying that - it really means a lot to me. I kind of feel like I am a bummer rather than a positive story, since I don't yet have any solution. (I've noticed that if I mention to some people that I am still having major pain and problems with BFing (like our ped, or the woman who runs the BF store in town, etc), they get that aura that suggest that either 1) they think I am crazy and complaining or 2) that they'd rather not be faced with anyone who has a problem that can't be solved.)

I feel like the pain while feeding has actually been getting worse over the last week - it used to be better with the shields, but I feel like it is gradually hurting more and more with the shields now. :(

We also had our 3 mo apt at the pediatrician today, and it seems that up until 2 weeks ago she was gaining 5 oz/wk while we were supplementing with one extra ebm bottle per day of about 4 oz, and then when we stopped that 2 weeks ago she switched to only gaining 1 oz/wk again. The ped didn't seem to believe me that one bottle per day could make such a difference, and said that it was just the normal slow down of weight gain that happens at this age. But I think that the fact that she was only gaining 1 oz per week for the 5 weeks before we began supplementing, and then went back down to 1 oz per week so abruptly with the removal of the bottle suggests very strongly that she doesn't quite get enough without supplementation. Also, while the supply on my left breast is huge, I feel like the supply of the right breast has been going down. When I pump on both sides, I seem to be getting less and less on the right side. So I'm concerned that she still isn't nursing well, even though she looks like she is nursing properly.

I really hope that the solution is something like tongue tie that can be clipped, b/c I'd really, really like this to be a solvable problem! Thanks again for your responses, everyone. :)

Edited by cww - 4/20/11 at 8:45am

[cww]

So we made an appt with the doctor in Albany for next Monday, so we'll be renting a car and driving up there just to see him.  Now I'm a bit nervous, b/c I'd really like this to be the solution, but I don't know if 1) once the dr sees her in person if he will even think she has a problem (although over the phone he said it definitely sounded like there was a restriction) and 2) if the dr does recommend the procedure, if it will solve things (and if not, then what next?!?). 

And if it does turn out that the procedure is recommended for her, then I'll have to let them take her off for 15 minutes to do laser surgery, and while I know that the risks with this procedure seem to be pretty small, I know I will be very unhappy having her off with things being done to her. :( 

So if anyone out there who has had this procedure done with good results wants to say encouraging things to me, I wouldn't mind... :)

[OSUvet]

Originally Posted by cww 

So if anyone out there who has had this procedure done with good results wants to say encouraging things to me, I wouldn't mind... :)

 Hi cww. Your story sounds a bit like mine, which you can read here if you are interested. My LO is over 9 weeks old now and had a posterior tongue tie clipped the day he was 8 weeks. Since then, my nipples are finally healed and while his sucking isnt perfect, it is SO much better and he is still making progress as he learns to keep his tongue forward. So if you do not get a perfect pain free latch immediately following the procedure don't give up. Suck training and tongue exercises can help. 

We ended up seeing a dentist with a great reputation for his experience with posterior tongue ties in my state (ohio). He examined the tongue, said it was very tight, and clipped the frenulum with iris scissors. It took less than 15 seconds, bled a few drops, and I nursed him immediately and he stopped crying. I wish you the best! I know all you have been through has been so, so difficult, 
 

[gemasita]

I really hope this solves at least some of the problem for you!  I know the procedure is nerve-wracking for a lot of parents but it is SO quick and I really don't think it's painful for the baby - just that they restrain them a bit and the babies don't like that.

For us, this didn't end up being the problem and we were actually devastated when they said there was no tongue-tie because we were hoping that would solve everything!  I really hope this is it (or a big part of it) for you!  You have been through so much and I know you are hopeful that this will explain a lot.  From the pictures, it does look like there is something odd there.

[cww]

Thanks OSUvet and gemasita, for your responses. I'm glad to hear that things have improved for you after the procedure OSUvet - I read your story, and it sounds very positive and hopeful. Gemasita, I hope that you do find a solution to your pain soon. (I'll be keeping an eye on the boards hoping to see good news from you sometime soon...) I send the doctor photos, and he said that "there is no question that the lip is tied and would benefit from revising it" and that "The tongue also appears to have restrictions and looks as it may have a posterior tongue tie," so this is a bit of a relief - I don't know if the procedure will help, but it definitely looks like there is something there (we'll see for sure at the visit on Monday). Now I just have to commence battle with the insurance company (ug - not going well so far...) I'll update once we have the visit on Monday to let everyone know how it went. I don't know if this will be a solution, but it seems hopeful. Thanks again for your support and advice, everyone. Without the feedback from these boards, I don't know that we would have ever figured this out or found this doctor!

[gemasita]

cww - glad you could send some pics to the doctor before making the trip!  Sounds hopeful!  Even if there are other issues going on with your pain, having a baby that can suck with an unrestricted tongue and lip should definitely help your comfort!!!! 

Yes, I'll update if I have improvements.  Can't wait to hear how things go for you Monday.

[cww]

Quick update:

We did go to Albany yesterday, and they did revise both her upper lip and the tongue.  He said she definitely had a posterior tongue tie, and he cut it a full half an inch.  It was difficult - she came back crying and with a bloody mouth! - but she seems fine - we started nursing right after the procedure.  (The worst part are these exercises that we have to do 3xday for a week to keep both wounds open so that they don't reseal - I can't manage it - so far my husband has been the one to do it!)

She is definitely eating faster - in about 10-20 minutes (down from 1-1.5 hours) - when I fed her right after the procedure, when she came off the breast several times, it sprayed her right in the face :), which hadn't happened before.  I've been feeding her without the nipple shields since then, and it is definitely less painful (I don't have any pain in between feedings now), but I have to hold her in exactly the right latch, and it still hurts some when she feeds (but definitely less).  I think only time will tell if this is because I'm still recovering from the previous trauma, or if she needs to relearn a little bit how to nurse, or if we still have another thing that we need to address. 

She does still slip off the nipple often, so that's something we may need to problem solve, but I noticed that now she actually sticks her tongue out when she begins to nurse, like she wants to lick the nipple.  She is also able to hold a pacifier in her mouth now, which she never could before (I had no idea that was a symptom of tongue tie). 

I'm hoping that gradually the pain will go away completely, and that she will gain weight easily from here on out without the added EBF in bottles.  I'll update again when we have a longer term experience!

Thanks so much to everyone here - without the advice from this thread, we wouldn't have gotten to this point!  I can't thank everyone enough!!!!!

[ShwarmaQueen]

Originally Posted by cww 

Quick update:

We did go to Albany yesterday, and they did revise both her upper lip and the tongue.  He said she definitely had a posterior tongue tie, and he cut it a full half an inch.  It was difficult - she came back crying and with a bloody mouth! - but she seems fine - we started nursing right after the procedure.  (The worst part are these exercises that we have to do 3xday for a week to keep both wounds open so that they don't reseal - I can't manage it - so far my husband has been the one to do it!)

She is definitely eating faster - in about 10-20 minutes (down from 1-1.5 hours) - when I fed her right after the procedure, when she came off the breast several times, it sprayed her right in the face :), which hadn't happened before.  I've been feeding her without the nipple shields since then, and it is definitely less painful (I don't have any pain in between feedings now), but I have to hold her in exactly the right latch, and it still hurts some when she feeds (but definitely less).  I think only time will tell if this is because I'm still recovering from the previous trauma, or if she needs to relearn a little bit how to nurse, or if we still have another thing that we need to address. 

She does still slip off the nipple often, so that's something we may need to problem solve, but I noticed that now she actually sticks her tongue out when she begins to nurse, like she wants to lick the nipple.  She is also able to hold a pacifier in her mouth now, which she never could before (I had no idea that was a symptom of tongue tie). 

I'm hoping that gradually the pain will go away completely, and that she will gain weight easily from here on out without the added EBF in bottles.  I'll update again when we have a longer term experience!

Thanks so much to everyone here - without the advice from this thread, we wouldn't have gotten to this point!  I can't thank everyone enough!!!!!

Fantastic news!! Thanks for updating!

[gemasita]

That's a great update!  Hope things continue to get better!  Sounds promising!

[OSUvet]

Glad to hear it! My LO still falls off some too. It took about a week and a half for me to heal and him to start using his tongue more before feeding was painless after the procedure. I think things will continue to improve for you!

[gemasita]

Can't wait to hear more.  I started niphedimine (sp?) for vasospasms a few days ago.  Waiting for improvement.  Went without the nipple shield all day yesterday and DS did fine but the feedings were pretty painful to me.  I can't wait to be out of pain but still wondering if the day will EVER come?!?!?!

[cww]

Another update:  So it's been about 2.5 weeks since the tongue and lip tie were snipped.  Things are much better, but BF still hurts. 

The good:  She's still eating quickly, averaging at about 20 minutes, and you can actually hear the milk going down in big gulps at the beginning of a feeding.  She has gained a whole pound since the tongue tie was corrected.  As I mentioned in the previous post, we've been feeding without the nipple shield, and the pain is much better, but it's still not great. 

The bad:  My nipples are now coming out deformed and flattened, either looking like a lipstick (which we had before the tie was clipped) or looking pinched like a wedge with a white line across it.  We are still getting the vasospasms despite a month of taking nifedipine (although I think the frequency between feedings went away with the medication - unfortunately, it also gave me bad headaches).  It definitely hurts much more when she latches on and then tends to get better shortly into the feed, but it still hurts most of the time when she sucks.  I saw an LC about 1.5 weeks ago, and she worked on positions, but if that helped it was more marginal.  The LC said that she was showing a lot of teething signs (trying to stuff her whole fist into her mouth and crying for a short burst out of nowhere when not hungry) and that that could mean that she is clamping down when she eats, but she shows no signs of teeth anytime soon (and BF has been hard enough without teeth!), so I'm not sure that that is it.  The LC mentioned the possibility of using a Haberman bottle (now Medela special needs?) to try to train her to use better tongue action (but then took this back when she saw the teething signs) - has anyone heard of this?

I'll probably post a fresh post about persistent BF pain after tongue-tie release to see if there is anyone out there with more specific advice, but I just wanted to update here.  The news overall is good, but it still needs improvement. 

Gemasita, I hope that the nifedipine helped with your pain - I hope to hear an update some day.  For me, it helped with the pain between feedings but didn't help with the pain during feedings - I took it for a month, and then have been off it about a week, and haven't noticed anything getting worse since phasing it out.  I hope you've found some things that helped with improvement for you, too.