Tongue tie mania??

[TheGoldenApplesOfTheSun]

I've just had the strangest experience seeing a "tongue tie specialist" who seemed honestly a little unhinged?

Backstory is my baby is 6 weeks old and breastfeeding started out really well but I have been having real trouble lately with baby getting restless on the boob, slow weight gain, painful nipples after a feed - ended up concerned enough to see a breastfeeding counselor who suggested I see this lady.

I thought she would assess all aspects of feeding and give advice on position etc, as she's supposed to be a lactation consultant as well as dealing with tongue tie. But she didn't even really pay attention to the feed! (After I made sure he was hungry for the appointment, too!) Just remarked his latch is bad. She stuck her fingers in his mouth as he cried and diagnosed him with a "posterior tongue tie" which I hadn't heard of. Wanted to snip it there and then but I said no thanks will go away research and potentially come back.

I've since gone down a rabbit hole of internet research about posterior tongue tie. A friend of mine has a little boy who was tongue tied but his was really obvious - he couldn't stick out his tongue and the end of it looked heart shaped. Apparently that's "anterior" tongue tie. The "posterior" tie is something that only seems to have appeared since 2004? My little one's tongue seems pretty normal to me - he can stick it out and move it around his mouth ok? It's confusing because if you search tongue tie you get all this stuff and studies about how snipping it helps - but it seems that's only the "anterior" kind.

I thought I'd share these links in case anyone else stumbles down the same path -
littlebearcare.com/posterior-tongue-tie/#get-clipped

www.sciencedirect.com/science/article/pii/S0266613817303467?via%3Dihub

barbarahigham.com/2018/07/06/does-tongue-tie-disempower-mothers-and-damage-babies/

It honestly feels like alternative medicine. Especially when you hear people say it is hard to diagnose and some medical professionals don't believe in it. The last straw was hearing from this consultation session that a snip won't clear up feeding difficulty right away but takes weeks after as the baby needs to relearn how to use their tongue?? My friend whose baby was anterior tied said feeds were immediately better - from right after the snip.

PS I wasted £100 on this session! And it would have been more if I'd gotten the "tie" removed...

Why didn’t you get referred by your hv or gp?
Councillors and consultants are all well and good but is she an actual medical professional?

The person I saw is a nurse and I think also a health visitor - so not just some random woo-person! Also has those letters after her name about lactation - IBCLC I think?

My GP honestly said he doesn't know enough to advise about breastfeeding and go with whatever the breastfeeding counselor suggests, shrug

Hi OP. I understand it's confusing, but posterior tongue tie is a real thing and can be (not always but often) a real barrier to breastfeeding unfortunately. Posterior ties are harder to identify than anterior ones as the frenulum isn't so easy to see. The LC you saw, who put her finger in your baby's mouth, will have been feeling for the frenulum. You should be able to run your finger under your baby's tongue with no obstructions normally. An obstruction could indicate a tongue tie. A U shaped tongue when your baby cries could also indicate a posterior tie.

The issue is, that your baby needs to be able to raise their tongue up completely during a feed, to compress the breast. A U shape (caused by a posterior tie), doesn't allow this compression. So a baby can have trouble with effective milk removal and they can get tired quickly whilst feeding, doubly preventing them being able to access quantities needed.

A snip is very quick. Most babies barely register what's happened. Some mothers notice instant results with feeding, but do bear in mind that it usually takes 2 - 4 weeks to get big improvements, as baby has to relearn how to use their tongue.

P. S. Although the thought of having to wait 2-4 weeks for a big improvement sounds daunting, in reality they are improving bit by bit during this time and for many mothers having the snip is the difference between being able to continue breastfeeding or not. Any mothers who get instant results, whether for an anterior or posterior tie, after a snip, are probably the minority to he honest. It takes a bit of patience!

Also, a baby with a posterior tie may well be able to stick their tongue out and move it around. The main problem is with the upward compression, as I described just now.

I hope this helps to clear things up a bit!

P. P. S. If the lady was a lactation consultant, she will be extensively trained, with a background in health care (midwife for example), years of experience and exams to enable her to be a listed LC.

Did you have one done then @Somethingsnappy? If so what was your experience like? Would be interested to hear from anyone else whose baby was diagnosed posterior TT.

Thing is though, it seems impossible to distinguish between posterior tongue tie and normal anatomy. Surely everyone has a frenulum of some kind - it's just part of your mouth? I've just looked in the mirror under my own tongue and I have a similar stringy bit connecting the base of my tongue to the floor of my mouth - and I know from my mum I breastfed fine as a baby.

I'd understand it if his tongue seemed oddly shaped or restricted in its movement - but it doesn't. He can suck my finger strongly and I feel his little tongue moving, and copies me when I stick out my tongue at him. When he cries his tongue lifts up a bit and doesn't seem glued to the floor of his mouth.

I totally understand the appeal of a solution to breastfeeding problems (heaven knows my nipples could use one!) But cutting part of what seems like a pretty normal tongue just seems far fetched to help. And as to it being a simple snip they sleep through - well it looks like the complication rate is similar to infant circumcisions, which most posters here understandably would not choose for their child...

You are right, it’s the way modern, private medicine is moving. People want a simple answer/explanation/cure for their problems. Diagnoses are becoming more numerous and expanding as a result.

Anyway the evidence is that babies with an element of tongue tie in all but the most severe cases can learn to feed normally with proper breastfeeding support alone. (Which is often sadly lacking, so no wonder they struggle) So yes it seems the milder cases of tongue tie are just a normal variant of a human tongue

It feels a long time for me now as my son is 6, and happily chatting away to me whilst playing with his Lego 😁

But he had a 50% posterior tongue tie. His latch was very poor compared to his older sister. He just couldn't sustain the latch and would end up swallowing loads of air, feeds were always so difficult. We saw an osteopath/tongue tie specialist who attempted on three separate occasions to snip the tie; it improved but was never perfect. I persisted and breastfed him til he was about 18 months old. I'm glad it didn't stop me because it was what I wanted to do but I still wonder if it was the best thing for me to do.

Tongue tie absolutely does make a massive difference- the difference between feeding my DD to my DS was vast. After the initial problems of getting the latch right etc, it was easy to feed her. With my son it was never easy- this is bringing back many memories of all the difficult feeds and the many many tears.

I don't think this is a modern thing- in the past midwives were checking for this at birth and snipping them immediately. I have no problem with FF whatsoever but I do think the prevalence of it in the mid to late 20th century meant that so much of the support and knowledge around breastfeeding and tongue tie was lost.

OP, i have had one baby (my 4th) with a bad posterior TT, but I also work postnatally with mothers and their babies.

While it is true that there will be plenty of babies with TT who can adapt their feeding to find a way to manage and also that some babies will feed OK once they grow, their mouths get bigger and the TT gets more flexible, there will also be lots of babies who simply can't manage to feed effectively with a TT. If not for formula, these babies would be unable to access enough milk in order for them to gain weight.

Is there an obvious U shape to your baby's tongue when crying? If not, it may be that the tie is not particularly severe. But you have mentioned slow weight gain, so it could be worth getting a second opinion as to whether it's worth getting the tie snipped. If it's reassuring at all, I've only rarely come across complications of the procedure of reversing a tie.

As I mentioned, a posterior tie may not stop a baby being able to stick out or move their tongue, but a significant one may well prevent them being able to raise the tongue high and firmly enough to compress the breast while feeding.

I agree with the PP who said that the trend towards FF in recent decades means that many TTs have been missed or gone untreated in the past.

I thanked my lucky stars a posterior tongue tie was diagnosed with my DS. It was dealt with quickly and actually made a huge difference within days. I fed him for a year and it was lovely, but before the snip it was horrific.

Unfortunately a lot of things related to breastfeeding problems aren’t always the most scientifically sound. Some will swear that tt snipping helped, others will find no difference in latch. I’ve always been a little sceptical of posterior tt. The tt specialist round our way always recommends a cranial osteopath, which as far as I’m aware is alternative medicine with no scientific basis. I volunteer at the local breastfeeding groups and it seems that every other mum we see has been advised by feeding specialists to part with £££ to see one of these charlatans and it’s makes me want to scream. 100% of them don’t realise they are paying for alternative therapy either. It also seems that CMPA is the answer to every infant health/breastfeeding problem...would you believe there’s not even any solid evidence that breastfed infants can suffer it! Yet mums will be told to go dairy free at the drop of a hat.

I can only offer my anecdotal experience but it's a positive one regarding resolving a posterior tongue tie.
My DS seemed to be breastfeeding OK but wasn't gaining any weight by 3 weeks; finally saw a midwife who had experience with tongue ties and referred us to the specialist unit (we were lucky to have one locally). It was then found he had a posterior tongue tie and we had it snipped there and then.
He was grumpy for a few days, understandably, but it completely turned everything around. He went from skinny little thing to massive chunker in a matter of a couple of weeks. He simply hadn't been getting enough/the most fatty milk apparently. It also reduced a lot of pain for me as well.

My son had a TT our midwife referred him to the lactation team before we left the hospital we tried to get him to latch better but it didn't work, it took 6 weeks to get it snipped as the 1 person in our area qualified to do it was on holiday then on a 2 week training course. It left like the longest 6 weeks of my life. It was over in a second, DS was fine after and his feeding did improve. We decided to continue combination feeding him though and with my bottled breast milk and breastfeeding.

My DD had struggled to breastfeed as I was poorly after birth so my supply was terrible. So the TT and feeding problems with DS were easier for me to get my head round and understand that fed is best.

The sip helped with feeding so I would recommend it if you're struggling but you can choose to bottle feed expressed milk if that works for you or even a mixture of breastfeeding, bottled breast and formula. I worked myself up into a state with DD and my crappy supply and wished that I'd started combination feeding earlier for both of our sakes. I had no doubts about helping DS breastfeed by getting the TT sipped but knew of it didn't work there were other options.

Also I agree with PP in my area TT is only treated for breastfeeding babies so knowledge and resources are very thin on the ground.

My dd has tongue tie and was diagnosed at birth. They don’t snip at this hospital and told me they would refer me to someone who would.

However, because I gave birth in a different county, her details got lost in the system. I mentioned it at her 6 week checkup, but again, nothing happened.

She finally got sent to a specialist when she was 1, but because she had weaned successfully, they didn’t want to do anything unless it affected her speech which it doesn’t

She’s 8 now and still tongue tied. She can’t fully extend her tongue out, and she can’t roll her tongue either but apart from that it doesn’t seem to bother her.

I wish it had been done at birth because I wonder if I might have had more success breastfeeding. It was agonising and I had to give up quick and bottle feed her.

Ds was born with lip tie...which I accidentally snapped taking his jumper off as a toddler

My DD had a posterior tongue tie. I couldn't get her to latch unless we used nipple shields. At eight days old it was snipped, and it took me another five weeks to get her off the nipple shields. We both found it really hard, me emotionally so because she had struggled to feed from birth and I felt like trying to get her off the nipple shields was unnecessarily upsetting her further. Medical professionals were incredibly stern that I needed to get rid of the nipple shields ASAP, but without them I don't think I would have managed to breastfeed.

Overall our experience was very positive, DD can breastfeed, and she couldn't before the TT was snipped. The fact your little one can latch suggests they do know what to do, hopefully it won't be so bad for them to feed afterwards. The TT being cut makes the mouth work properly, and baby has to learn to use their tongue all over again, because they usually compensate in other ways to be able to feed. TT can also affect speech as they get older. If I have more DC I will insist they see a TT specialist before we are discharged if they are not feeding well.

I have no doubt my second had a tongue tie. My first latched from birth and second just could not latch no matter how much nurses or lactation consultants forced his little mouth over my nipple. He never suckled my finger and found a bottle difficult at first but eventually got there. I exclusively pumped for a year so it definitely wasn't a case of me 'not trying hard enough' which you see often in critisms over tongue ties. By the time it was actually diagnosed he was well used to a bottle and we kept going with that and eventually at about 4rmonths old he latched for about 3 minutes one time. There is nothing more frustrating than having a breast full of milk and a baby starving hungry but absolutely incapable of removing the milk.

@Dingleydel, I think the reason why some mothers don't notice a difference in latch after a tongue tie revision, is because they are hoping/expecting to notice an improvement immediately. It is normally advised that, in all but a few cases, it will take between 2 and 4 weeks to see an improvement. Unfortunately, many women are not told this. I can assure you that posterior TTs are most certainly a thing. More difficult to spot and diagnose than anterior ones, but can have an equal negative impact on effective feeding. Both anterior and posterior ties can range from mild, where the baby can compensate and still feed effectively, to moderate, where the only sign may 'just' be sore niples, to severe, where it impossible for the baby to latch effectively and will lose weight and 'fail to thrive'. It is important to investigate if a baby is struggling to latch, if breastfeeding is important to the mother.

@Dingleydel, I do agree with the rest of your post though. Cranial osteopathy is an alternative therapy.

@Somethingsnappy

Hi OP. I understand it's confusing, but posterior tongue tie is a real thing and can be (not always but often) a real barrier to breastfeeding unfortunately. Posterior ties are harder to identify than anterior ones as the frenulum isn't so easy to see. The LC you saw, who put her finger in your baby's mouth, will have been feeling for the frenulum. You should be able to run your finger under your baby's tongue with no obstructions normally. An obstruction could indicate a tongue tie. A U shaped tongue when your baby cries could also indicate a posterior tie.

The issue is, that your baby needs to be able to raise their tongue up completely during a feed, to compress the breast. A U shape (caused by a posterior tie), doesn't allow this compression. So a baby can have trouble with effective milk removal and they can get tired quickly whilst feeding, doubly preventing them being able to access quantities needed.

A snip is very quick. Most babies barely register what's happened. Some mothers notice instant results with feeding, but do bear in mind that it usually takes 2 - 4 weeks to get big improvements, as baby has to relearn how to use their tongue.

I had my upper frenulum cut when I was a child but old enough to know and I can tell you it was really painful. I'm dubious about the claims of things being "virtually" painless for babies, tongue tie, circumcision and probably other stuff.

Like others I can only draw on my own experience but I regret allowing my ds tongue tie to be snipped.
He is one of a twin and my 1st born and his twin (t2) had no problems latching so I knew something wasn't right.
The hospital had what they called "breastfeeding experts" based there so duly sent me off to see them.
After suggesting it was poor positioning when I finally got both twins out of neonatal I was able to demonstrate feeding with t1 proving I knew what I was doing.
A sweep of his mouth was then done, a tongue tie declared with promises of an easy fix, I was told they only cry because someone has their fingers in their mouth not due to pain so I agreed.
Absolutely made things so much worse, he had no control over his tongue, we struggled on for the 2weeks we were in hospital and whilst home.
Eventually when at 6 weeks old he still wasn't back at birth weight we were admitted back to hospital and ended up doing formula top ups at which point he began to thrive.
I felt such relief until one of those experts we'd seen rang to see how we were getting on, when I told her about the top ups she said how disappointing that was.
Anyway, turns out my ds is actually v hypermobile so the poor mite just couldn't feed effectively and now has a slight lisp to boot.
I'll always regret rushing into that decision, I'd had twins under a ga, t1 was v poorly after and a disabled older child at home and wasn't really thinking straight.
Now, obviously your circumstances are unique to you so the point I'm trying to make (in a rather long winded way) is just make sure you are happy with any decision you make.
Mine had a mixture of breast and bottle for 9months in the end so all's well in the end.

Somethingsnappy thanks. I suppose by sceptical I mean that I suspect they are rather over diagnosed, rather than non existent. It’s at the point where literally every baby we see who hasn’t been diagnosed with a normal tt at the hospital is ending up have a posterior tt sniped by a private practitioner when there’s not much data (if any ?) that it does have an effect. Of course that may well be that it’s not been studied. And yes some mums report that it helps. I’d so love to see more evidence based help and treatment for feeding difficulties. Obviously it’s such an under researched and underfunded area and I feel some private practitioners have filled a void where there should be proper evidence based treatments on offer. It’s seems kellymom is treated as a scientific journal when it comes to breastfeeding problems.

DD had one snipped twice. Didn’t make any difference and made me obsess over her tongue for months. It really is a rabbit hole once you start looking into it

Lactation Consultants are usually midwives or nurses or health visitors with more knowledge about breastfeeding than anyone. My gran was an informal midwife and used to cut tongue ties in East Africa in the 30s because of course back then if a baby couldn’t breastfeed they’d die. Cutting a posterier tie was often too risky to attempt and in (our language) were called god’s luck. As in it was up to God if the baby lived or not.

Of course in modern times things are different. If you want to stop bf and keep the tie it’s up to you. I personally let them cut my DS’ as I wanted to continue bf but it’s up to you.

I had my baby's posterior tie cut. It was 50% restricted. I noticed a difference in about 3 weeks. Not just in pain to me, but his reflux disappeared, he slept better and feeds stabilised. Before he was pretty much feeding for hours at a time with 30-45 minute breaks in between.

I haven't read the full thread but my second born had this and initially she was feeding fine. But then somebody mentioned this posterior tie and it was cut there and then (maybe 4 weeks). And I think it prevented any potential feeding issues as she got bigger.
I wish I'd known about this for my first born as he was a terrible feeder with reflux and I often wonder if he had an undetected tongue tie.
If you have the opportunity and the means to get it done then I would recommend it.