Posterior Tongue Tie-Can anyone advise please? - Mothering Forums

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Old 09-18-2009, 03:10 AM - Thread Starter
 
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Hello there,
My son is now 6 weeks old and was diagnosed with posterior or submucosal tongue tie at 2 days old. We managed to find a doctor who would clip the tie at 5 days old. I began pumping and finger feeding at 3 days old.
Basically there has been no improvement and I need advice on what to do now. We have seen a LC several times but no suggestions.........
I have tried different feeding positions, still getting severe nipple compression and pain.
After 2.5 weeks we changed from finger to bottle feeding expressed milk, I was worried this would make breastfeeding harder but our wee man luckily changes between both ok.
However-now I am only managing to put him to the breast about once daily as it hurts so much. Could bottle feeding make him bite more at the breast?
I tried nipple shields several times and i think he bit harder so i have abandoned them now.

What do folk think about finger feeding a 6 week old baby-should we go back to that?
Will it really help him to extend his tongue?
How long have folk finger fed for?

Also, I have emailed Cathy Genna photos and she thinks the tongue still looks restricted. But we see him poke his tongue out well beyond his lower lip.
Is lifting the tongue up more important to breast feed properly?
I am going back to see the doc who made the clip next week.

How can I learn of some exercises to help his tongue? I asked my LC but she could not help. Does anybody know any?

Do folk think there is much hope of re-training a baby of this age? It seems that he has found an effective feeding method-he stays on by gripping with his gums and he can transfer milk well.............
its just agony for me!!!
Is there any hope..................
I have been told it should improve with age but so far it seems to be getting more painful the older he gets.

Any thoughts would be hugely appreciated.
Thanks so much.
Cuddley, Mum to cool wee man born 6th Aug 09
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Old 09-18-2009, 05:21 AM
 
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OK, so this isn't the easiest of situations - I'm sure you know that but you're doing a great job!

Posterior is a hard one, sometimes it isn't so tight when the tie is cut, sometimes it doesn't work the first time, for the baby to have a good position (in his mouth) the tongue does need to lift up for the baby to stimulate the breast, just in between the hard and soft palate, - hence baby is still clamping down, you may need to visit a ENT dr and find one who is willing to cut the tie and who is breastfeeding friendly. I would push a little harder with the LC to see if she has any colleagues who could help, you could also go to LLL and ask the leaders to go to their Area Leader who could point them in the right direction for help and finally I would contact Dr Jack Newman through his website - www.drjacknewman.com and ask for help or Dr Ruth Lawrence who works in the US out of university hospital their teams may be able to point you in the right direction for getting the help you need.

You can finger feed, I would imagine that you could for some time, if you are worried about the confusion aspect of nursing I would highly recommend the medela softcup, which is more like a cup than an artificial nipple, you can regulate how much etc - it's very good.

For exercises - you actually have to do them in an exaggerated manner and baby will copy, keeping the mouth open, stick out, move up and down (touching the teeth), side to side, and lifting in the middle of the tongue these should help keep the tongue moving and exercising - remember that he has had no movement like this before so even the smallest movement that he makes is a marked improvement.

Once the tongue clip is successful then i highly recommend 'biological nursing' by suzanne colson - LC, LLL Leader you'll find her through google, you may have to retrain baby or maybe not but it is perfectly possible.

good luck and well done for sticking in there - it's never easy when faced with challenges like these and i so admire mothers like you who face the challenges face on. Keep posting to let us know how you are getting on.

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Old 09-18-2009, 11:33 AM
 
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It may be that the tie was not clipped enough to begin with (common with a posterior tie), or that adhesions have formed, and it needs to be redone. I strongly recommend body work such as craniosacral therapy and/or chiropractic care. Babies often need bodywork after tongue tie release to help get past the adaptations they've developed to cope with the restricted tongue movement. You would need to find someone who is experienced working with babies. Is there another LC you can go to? I find it surprising that the LC was not able to provide you with exercises to help.
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Old 09-18-2009, 03:17 PM
 
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I have a baby who got his posterior tongue tie clipped twice (at 6wks then 8 wks). After the 1st time, more membrane tissue was exposed that needed to be clipped. I can't help with the finger feeding because the pain and nipple compression improved, but I'm still using a lact-aid due to poor transfer issues at 14 wks. I'm hoping that he will gradually be able to suck better as he gets older. I do remember that he used to "bite" my nipple all the time with his gums but that stopped when he could extend his tongue over his gums.

Here are some other posterior tongue tie postings that helped me when I was going through it:
http://www.mothering.com/discussions....php?t=1066633
http://www.mothering.com/discussions....php?t=1117008

I have been to see Cathy Genna Watson and she did give me a couple of exercises to encourage baby to extend his tongue (I did them in the beginning but have been a little lazy about continuing), maybe she can help, although she hasn't seen your baby in person?

Mom to DS born 6/09 and DS2 born 6/12

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Old 09-18-2009, 05:01 PM
 
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My DS2 is almost exactly the same as that.... except he also has bubble palate.

It was incredibly painful, and I hurt all the time, but we exclusively breastfed at the breast. No shields, no bottles, etc.
I just did my best to muster through it. I distracted myself by watching tv or surfing the net while her nursed. And just stuck it through.

He's almost 3 and still nursing.

My personal belief in my situation was that my comfort didn't trump what was best for my child. Exclusive breastfeeding at the breast was best for him. I just set aside myself for that time, and did what I felt I should. And I'm very glad I did.
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Old 09-18-2009, 05:22 PM
 
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Originally Posted by MonkeysRUs View Post
It may be that the tie was not clipped enough to begin with (common with a posterior tie), or that adhesions have formed, and it needs to be redone. I strongly recommend body work such as craniosacral therapy and/or chiropractic care. Babies often need bodywork after tongue tie release to help get past the adaptations they've developed to cope with the restricted tongue movement. You would need to find someone who is experienced working with babies. Is there another LC you can go to? I find it surprising that the LC was not able to provide you with exercises to help.
All this. It's exactly what I would have written.

Beyond that, the sentiment above about mama's comfort not trumping the needs of the baby is an interesting one. I'll take it a step further. Nursing ISN'T supposed to hurt. If it does it's a clear sign that things are happening has they should be. It's not just about discomfort, it's about the structure of the baby's cranium, the behavior they are learning, the muscles they are using-or AREN'T using, and their digestion. If there's pain they are not doing the job they are meant to do which can have other consequences down the road. While I fully understand and appreciate the dedication it's not one or the other. There is healing in between and IMO optimizing the function of the baby holds way too many benefits to be ignored. Mom's pain is a symptom and the underlying cause should be addressed.

I never recommend clipping the tongue without structural work. I just don't see it being terribly effective in most cases in terms of the behavior at the breast.

And to answer your question, elevation may even be more important IMO than extension. Most babies with a posterior tie can extend, but they have a hard time elevating. This will interfere with their ability to compress the sinuses as well as draw down and spread the palate.
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Old 09-20-2009, 08:44 AM - Thread Starter
 
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Hi,
Thanks so much everyone for your replies.
Its comforting to know other people have been through this.
We're seeing the doctor again tomorrow, will see how that goes and I am going to look into seeing another LC and trying to find someone who does Craniosacral therapy.
I live in New Zealand so unfortunately visiting Cathy Genna won't be possible,but I am trying to find out if there is anyone here who knows much about Tongue tie.
NZ is a pretty small country..........!
Thanks again-very much-
Cuddley
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Old 09-20-2009, 10:04 PM
 
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Beyond that, the sentiment above about mama's comfort not trumping the needs of the baby is an interesting one. I'll take it a step further. Nursing ISN'T supposed to hurt. If it does it's a clear sign that things are happening has they should be. It's not just about discomfort, it's about the structure of the baby's cranium, the behavior they are learning, the muscles they are using-or AREN'T using, and their digestion. If there's pain they are not doing the job they are meant to do which can have other consequences down the road. While I fully understand and appreciate the dedication it's not one or the other. There is healing in between and IMO optimizing the function of the baby holds way too many benefits to be ignored. Mom's pain is a symptom and the underlying cause should be addressed.

I never recommend clipping the tongue without structural work. I just don't see it being terribly effective in most cases in terms of the behavior at the breast.
I suppose I don't understand your point? My son was evaluated by several experts, including Brian Palmer, and it was determined that there was nothing that could be done to "fix" him without going through extraordinarily intensive surgery.
He simply did not have the physical ability to do anything different than what he was.
Additionally, now at almost 3, his speech and enunciation is entirely normal for his age and sex. Considering how restricted his tongue movement was at the time he was born, I have to say that I firmly believe that nursing helped him gain mobility. He can lift his tongue up, he cannot push it far forward in his mouth.

Pain while nursing is not "normal," I agree. But it's also not something he could control or change. I was the one who was making choices, and I made the one I felt was best for him, even if not best for me.
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Old 09-20-2009, 11:19 PM
 
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I certainly wasn't attacking you and I hope it didn't come across that way. All I'm saying, having worked with many nursing dyads is that there are things you can do between surgery and waiting it out. We can only do what we know at that time, so it's absolutely not an attack. However my practice refers mothers and babies to several kinds of practitioners alongside OR instead of clippings depending on the case. I don't believe that clipping alone does as much as something like clipping with PT or clipping with CST so I encourage families to do both.

Also there are times where clipping maybe wasn't an option for many reasons (clippings can be difficult or dangerous depending on the physiology of the infant) and in those cases body work can significantly change the picture. That is what I mean by optimizing the abilities and experience of the infant. There are many kinds of intervention. I wasn't addressing your case, simply saying that if nursing is uncomfortable and you can't/dont' want to/don't know to clip it still means there are things that can be done. That's all!
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Old 09-20-2009, 11:33 PM
 
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Originally Posted by Panserbjørne View Post
I certainly wasn't attacking you and I hope it didn't come across that way. All I'm saying, having worked with many nursing dyads is that there are things you can do between surgery and waiting it out. We can only do what we know at that time, so it's absolutely not an attack. However my practice refers mothers and babies to several kinds of practitioners alongside OR instead of clippings depending on the case. I don't believe that clipping alone does as much as something like clipping with PT or clipping with CST so I encourage families to do both.

Also there are times where clipping maybe wasn't an option for many reasons (clippings can be difficult or dangerous depending on the physiology of the infant) and in those cases body work can significantly change the picture. That is what I mean by optimizing the abilities and experience of the infant. There are many kinds of intervention. I wasn't addressing your case, simply saying that if nursing is uncomfortable and you can't/dont' want to/don't know to clip it still means there are things that can be done. That's all!
We did cranial sachral therapy. He was adjusted by chiropractors. We tried suck training. I also saw about 5 IBCLCs, some very well known.

The tongue issue combined with the bubble palate just limited what he could do, unfortunately. I even had two IBCLCs sympathetically say that if they were in my shoes, they'd EP. That just wasn't an option for us. Wouldn't have worked anyway.(I also had a breast reduction)
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Old 09-20-2009, 11:48 PM
 
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again, mama. Every case is different, every practitioner has a different skill set and we can only do what we can do. I was by no means addressing your situation, just throwing out an observation. Simply saying that if someone can't clip there may be other things you can do/other avenues to pursue. I was addressing more than anything people who may be going through this, not any one person specifically. There are many things that can be going on when there's pain. My only point is that there shouldn't be pain during breastfeeding. It's a sign something is off. Now, maybe that something can't always be handled without intense work by multiple practitioners, maybe it can't be eliminated but it still means something isn't quite right. So for my money I would still be doing the work because even if breastfeeding kept hurting. I'd be hoping that we were assisting the development of the baby-even if it wasn't reflected in my comfort.

I have seen too many mothers nurse through pain that wasnt' necessary to not say anything. That's all. That doesn't mean you fell short, or even that your situation COULD be changed. Just that in general most people do find there's a difference if they continue treatment and it's important to know that. I'm sorry that you weren't one of those people and you clearly did work hard too. That's really difficult and I certainly praise you for sticking with it. BTW...given that you you did all that you DID exactly what I'm talking about. You worked to optimize the baby's function even though it didn't feel better. That's a big deal.

I remember one client that did EVERYTHING thrown at her and nothing helped. No one had anything else to suggest at the time. She ended up EPing. I never forgot her.
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Old 09-22-2009, 12:49 AM - Thread Starter
 
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Hi,
We re-visited the doc yesterday(who made the original clip at 5 days old)
He said there was nothing more he could do- and that my son just has a short tongue and a high palate (he called it "cathedral" palate).
He thought the tongue movement was much better than previously, and said there would be no problems with speech.

I have found a Craniosacral therapist who lives 2 hours from here, so i will give her a phonecall.( In the same city we could also see another LC.)
Thanks to the people who mentioned that therapy-i had never heard of it before.
Meantime we are continuing to try b. feeding as much as possible, and doing mimicking exercises which he enjoys!
Thanks again everyone. I'll update soon.
Cuddley

p.s. What does E.P. stand for-its in the postings above?
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Old 09-22-2009, 12:55 AM
 
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Hi,

p.s. What does E.P. stand for-its in the postings above?
I hope the therapy helps.

EP is exclusive pumping.
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Old 10-03-2009, 03:32 AM - Thread Starter
 
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Hi,
just a quick update. We saw a cranio-sacral therapist 4 days ago, 2 days after that i thought our problems were over-we had a totally pain-free feed!
However since then the pain has gradually come back and is now as bad as ever........he is clamping down again.
i feel so down, but i guess it could take a few sessions?
is it hopeful that it seemed to help at first?

At the moment i can only feed on one side as i have a cracked and bleeding nipple.
any tips on how to get it to heal faster?
i am using lanolin cream.

also does anyone have any ideas how to make the tongue exercises fun?
i am struggling to do them as my wee man hates me poking my finger in his mouth...................

thanks,
Cuddley
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Old 10-03-2009, 09:44 AM
 
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Hugs, mama. Yes, it generally takes a few sessions...I have found more sessions the later you clip. For instance if you clip at day 5 then only a few sessions may be needed. However if you clip at 3 months then you are looking at quite a few more. What you are doing is helping your little one re-learn how to use muscles. The longer they have been using them incorrectly the longer it takes to correct.

I use homeopathy for things like cracked nipples, but what you can also think about is a calendula/hypericum lotion. It's just calendula and hypericum tincture diluted 10:1 (water to tincture) and swabbed on the nipples. It has properties to heal, protect against infection and ease pain as hypericum is a wonderful analgesic. I would personally stay away from salves with cracked nipples-but that's me.
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Old 10-29-2009, 06:38 AM - Thread Starter
 
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Hi again,
Another update, not sure if anyone is still following this thread, but anyway-
we had a second cranio-sacral therapy session, then the lady has been on holiday for 3 wks.........
we have also visited a speech and language therapist, who was kind and suggested exercises-but basically said this is the sucking method he has learnt and that it will be very difficult to change it. And that he is failing to form a central groove with his tongue-at times-and then resorts to clamping to get the milk out.
She said it will be worse when he is tired and so not to try breastfeeds at night or early morning/late evening.
So things are basically the same, I have also tried changing the feeding position but having no luck with that. Cathy Genna (in an email a while back) suggested "laid back nursing" as on Suzanne Colson's website.
has anyone tried that?
i just found that my wee man was very uncomfy in that position-and it made no difference to the pain.

alright, cheers for now
thanks pansorbjorne for your last message!
Cuddley
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Old 10-29-2009, 07:50 AM
 
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Mine only had an anterior tongue tie, but he had a crazy suck and latch that has over time and with work corrected itself. I actually found a position that worked for us to get him to open and latch well and to suck better. I sat on the edge the chair, legs apart, or sat on the floor or couch "indian style" and put him little but down in between my legs so that he's almost upright and tummy to tummy with me. Then I rest his head back over my forearm and rub my nipple from his nose to his bottom lip a few times to coax him to open and stick his tongue out a bit. Then I'd bring the nipple to his mouth quickly. Something about that head cocked back made him suck better and use his tongue better without clamping down or giving me a beveled nipple. It took a week or so of doing this consistently with every single feeding before he started doing better with other positions. And it wasn't until this past week that he finally started being able to latch well side lying so that nursing at night is more comfortable.
IDK if that would help you, but I understand the desperation and it wouldn't hurt to try.
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Old 10-29-2009, 12:30 PM
 
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Hey there! Thanks for the update. I'm sorry that things aren't going as well as you'd like and I do SO wish that your CST was around! Is there any way you could see someone else?

I have to say that I don't agree with the speech therapist but I get why she's saying that. That is *generally* true. But that's what CST does, reintegrate new patterns and allow neural pathways to form. So while she's right, she's not got all the info. Things can always change with the correct tools. We are very adaptable beings!
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Old 12-26-2009, 08:03 PM - Thread Starter
 
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Hello there,
My son is now 5 months old and I am so pleased to say that in the past 4 weeks things have finally improved!
We are just about exclusively breastfeeding now!! I didn't think it would ever happen.
He just suddenly seemed to relax and feed better.
It's still occasionally painful, but really it is so much better.
We didn't have any more cranio-sacral therapy, and we didn't change feeding position. Time has probaby been the biggest healer.
Thank you very very much to everyone who has posted here and given me encouragement and advice........it helped so much.
I am also very grateful to my friend who found me a double pump, and to the posting on this website (different thread) which recommended the haberman feeder.
I could not have made it this far without the relief that pumping and bottle feeding provided.

Best Wishes to everyone!
Cuddley
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Old 12-27-2009, 08:44 AM
 
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delighted that it is working out for you and you're getting to your goal - well done for your perseverance, it takes alot to do what you have done!

ewe + dh = our little lambs + we and have many just : and : life .
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