Tongue Tie Support Thread?

[Wholelottalove]

I've noticed a lot of posters recently in this topic whose babies have tongue ties or possible tongue ties and thought it might be good to have a place to share information/stories/support.

Both my babies have had posterior tongue ties divided at 8 and 4 weeks and whilst I went on to feed DD happily for 10 months things are still not 100% with DS (now 10 weeks) although much better than they were. In my experience many HCPs do not recognise TT or the problems it can pose for BF in particular.

To kick off, here are a couple of links I found helpful:

Info for parents on Unicef website: www.babyfriendly.org.uk/items/resource_detail.asp?item=439

UK locations where tongue tie can be divided:
www.babyfriendly.org.uk/items/resource_detail.asp?item=440

NHS exaggerated latch leaflet (see page 10) this seems to help get a better latch:

www.sunderland.nhs.uk/admin/mopil/pdf/20060405104105.pdf

Kellymom page on tongue tie:

www.kellymom.com/babyconcerns/bfhelp-tonguetie.html

Please feel free to add your resources/experiences/questions/comments. :)

What a great idea WLL, my DS's TT was also missed at the hospital despite me asking the Dr to check for it (as I had read so much on here about TT negatively effecting bf). MW picked it up at 5 days, was snipped at 8 days and bf improved massively from then on. He's a great big lump now

ds gained weight fantastically but left me in pieces - emotionally and physically. he was snipped at 5 weeks.
the BF didn't improve and as i slipped further towards PND i gave up and FF.

18 months on he was running round the living room, slipped, fell and did a disproportionate amount of crying.
the next day he was suddenly poking out his tongue and obsessed with it - like he's never had one before!
i am convinced he cut the tongue tie himself!

moral of the story, demand follow up from hospital. we never got any! they IMO hadn't done their job properly which lead to me FF which i originally didn't want to do. i'm also convinced the un-snipped tongue tie was responsible for ds puking EVERYTHING in his tummy at the slightest lump until he was 1yo.

This is a good idea for a thread as HCP's seem to miss it alot or don't recognise it has an impact on BF.
DS2 has a TT and it has made things very tough (poor weight gain, constant feeding, nippple trauma, mastitis, thrush after high dose AB's for mastitis).
In the end I had to relactate after 3 weeks off the boob to allow nips to heal which was so demanding.

Like you soppy something happend with DS and he was suddenly able to poke his tongue out, not all the way but past the gum ridge. He was only 6 weeks at the time so I don't know what.

If that hadn't happend he wouldn't be BF it would have been impossible, as it is he had alot of formula at the beginning because he couldn't feed efficiently, which is fine, but my choice was to EBF and the ignorant SOB's who looked after me post natally couldn't spot it and then when I did, refused to treat it.

These are the very same people that promote BF and make you feel guilty if you FF. If I can find out about TT using Google for 10 mins why can't they.

I often wonder how many women end up FF when they didn't want to because a TT has been missed.

Sorry for the rant but it makes me cross.

Anyone reading this who thinks they might have a TT baby - even if the latch looks good and a HCP has told you it's OK, if you have sore nips, a constantly feeding baby and borderline or slow weight gain suspect TT.
Poke your tongue out at your baby, he or she will try and mimic, if the tongue doesn't pass the lips, find someone who knows what they're doing and can help.

Once again sorry for rant

Great idea for a thread - thanks for posting those links, wholelottalove I hope new posters find the links helpful.

My baby (now 6.5 months) just wouldn't latch. I think the summary of our story goes something like this - EMCS, low birthweight tiny but very healthy baby, baby not latching despite trying, sleeping baby, mucusy baby, hand expressing and formula, baby eventually starting to latch around 3 weeks, BFing what we can manage followed by formula top ups, TT diagnosed at 5 weeks, not fixed until 8 weeks. Still finding it hard to get off our BF-top up-express roundabout, getting PND, stop trying so hard and now FF with a mini BF on waking.

I know that there are several factors in our story that made BFing a real struggle, but I was cross that a TT wasn't automatically fixed at the start. We were in hospital for 4 days and several midwives looked in her mouth and said it looked like she had a TT but they all seemed to disagree on whether it was an issue/problem. I remember one MW saying that she could suck on her syringe ok so it wasn't a problem. I remember, though, that she couldn't poke her tongue out, but never really noticed how little until I saw my friend's baby (same age, BFed) stick her tongue way out.

Anyway, yes I'm annoyed that we weren't referred immediately when they knew we were really struggling getting her to latch. 8 weeks was just too late for us, I wonder if things would have turned out differently if it was fixed much sooner.

Moral is - if you suspect it, ask for referral ASAP.

I suspect DD2 has TT - she pokes her tongue oiut, just past her lips but no further, shes 11 weeks

oh, she has slow weight gain, feeds all the time - makes a clicking noise but latch been checked by several HCP who all say it "looks" ok

DS3 is Tongue tied. I spotted it when he was a day old - it's attached right at the front. In hospital, the mw's and paed weren't overly bothered, and said it was rarely a problem.
Ds is feeding well though and gaining weight, so the HV thinks it won't be a problem. She has suggested that he will probably have a lisp, but that it will be better to wait and see, and have it clipped only if this is necessary.

I was told that if you snip before 12 weeks then it's no anaesthetic.
If it needs doing after that then it's a general anaesthetic!
We thought a snip early was better than finding ds had a speech problem later and having to have a general.

Soppy - that's sort of what DH and I thought, then I spoke to my sister (a dr) who said it was better not to have a procedure unless it was absolutely necessary. Also, as he's feeding so well, I'm reluctant to have it sorted in case he starts having problems feeding (if that makes sense!)
Ds has his 6 week check next week, so I'll probably have a chat and see what the dr thinks.

I get where you're coming from faverolles
We thought a v minor proceedure now was better than possibility of major later.
If I'm right in my observations ds' Tongue tie affected his eating- no lumpy solids till at least 9mo an not real food till over 1yo as he had a super strong gag reflex which stopped overnight when he cured his Tongue tie. I think it was because he couldn't move food to the back of his mouth normally because of restricted Tongue movements.
I'm also fairly sure his limited range of constanants is linked to it. He has a massive vocabulary for 22mo but lots of missing constanants. He is catching up tho so I'm not worried now but dread to think what problems he'd have if he hadn't sorted the problem on his own!

Fab thread, wish it'd been around 4 months ago!

Our abbreviated story: DS struggled to latch, losing weight, TT not diagnosed until day 5 despite me having asked multiple times about it. Got quick referral (2 weeks) but was refused as it would only be "to give me the pleasure of BF" Had been expressing and FF mixed feeding in the mean time. Two days after doc refused to snip it and just as I was starting to question how long I could realistically continue to express DS managed to break it himself (it was only a little thread at the front then the normal membrane behind - with his hands constantly in his mouth he must have got a little finger behind it). Was very lucky to have the fantastic support of some ladies here and we're now EBF.

Was a bit as someone on my post-natal thread also had a DS with TT but that was snipped to help her BF (grr at the doctor, obviously, not my thread buddy).

We were also told it'd have to be done under GA, which we wouldn't have wanted, but since DS broke it himself without any apparent distress (we only noticed when he stick his tongue out, there was no crying or anything) I don't quite see why. However we were very concerned about possible speech impediments as we will be raising him to be tri-lingual (DH isn't English and we don't live in an English speaking country) and we didn't want it to be any harder than it had to be. Doc was rather unsympathetic unfortunately.

We were very lucky in the end but I think you really have to keep pushing for a diagnosis and get a second opinion if it's impacting BF and they won't snip it.

Is it true that only boys get affected by TT? PIL (massive worriers

Last sentence should say "Is it true that only boys get affected by TT? PIL (massive worriers) googled and found a statistic saying it is but I don't really know why that should be."

I have a tongue tie and last time I checked I was female.
I have 4 boys and three of them have tongue ties. DS1 (12) has a large tongue tie, bf well afer a slow start, ds2 no tongue tie, ds3(8) posterior tongue tie fed well but 2 years speech therapy, ds4 (10 months) small posterior TT very slow weight gain, constant feeding and it hurt.TT spotted by BFC at about 2 weeks, finally got an appointment to get it cut at about 5 weeks and the consultant said it would make no difference and wouldn't do it. We spoke to friends and were advised to get a second opinion- which we did and the TT was snipped at 9 weeks - he bf straight after and it made such a difference and we are still going strong at 10 months.

We hadn't ever realised that the other boys or I had TTs until this but now we know why ds1 can't lick an ice cream.

Fenouille - I have read that boys are more prone to TT. I live out of the UK as well and the docs here are very unsymapthetic too, they think more about possible speech impediments and snip at 15 months.

favorelles - as far as I understand it, if baby is feeding well and you are painfree, there's no need to snip. The degree of tongue tie isn't always related to the degree of feeding problems so a baby with a tight TT might be OK and another with a minor one might have big probs. I think some babies are able to compensate better due to the shape of their mouths and also mums boobs.

Onlywantsone - can you get referred to a paed or TT clinic at hospital or someone who could say for sure. I was told that my baby was latching 'beautifully'. GP and MW's don't always have training to spot TT. 11 weeks isn't too late to have it treated if necessary.

Wow, lots of stories making me really quite sad and angry. There seems to be a real lack of consistency across the country in terms of recognising the condition and then whether it should be divided. FWIW I am in two minds - although DD improved a lot after her division, with DS the progress has been slow and two steps forward, one step back. I do wonder whether things would have improved on their own as he got bigger in any case.

fenouille I think TT is more common in boys.

I've definitely noticed a difference in the amount of info on TT out there - a couple of years ago when I was struggling with DD, it took weeks and a person on one of the kellymom boards before we even thought our issues could be due to TT. I then had to find a private lactation consultant to do the division.

AFAIK there isn't a support group/website etc out there in the UK dedicated to this and it's definitely something I am considering trying to set up although with a toddler and young baby not much time. I think peadeatricians need to be trained to recognise TT and that it often does cause issues with feeding.

Actually not just peadeatricians but midwives and health visitors need more training. With DD the HV refused to refer us to be looked at as she couldn't see DD's TT - as you often can't with a posterior TT.

What made me so cross was that although I knew TT was making a difference to how my baby fed - I was dismissed at first and I was lucky in that I wasn't a first time mum and also had aprox 7 years previous bf experience and i persevered because i knew something wasn't right. A small TT can make it hard for a baby to feed effectively but also a different baby can bf fine with a much larger TT. I was fortunate in having an experienced and knowledgable friend who spotted it with ds4 and then a HV who quickly referred me the first time and a gp who referred me the second time. I had never read anything about it making a difference to bf and it had never been mentioned with my other boys. I am so grateful that we eventually sorted it out and I am hoping that we can continue to bf as long as possible.

My DD1 had Tongue tie- diagnosed at 6 days- I knew something was wrong feeding her (my 2nd LO) but i was told latch was fine... She was clicking when feeding and was constantly feeding with very few wet nappies and poor weight gain. had already started giving ff by the time a m/w noticed it. Was snipped at 10 days (though had to drive 1 hour to hospital where they would do it) but bf wasn't really working by then. Bf was easier after snip but had supply problems so eff by 4 weeks.
Have just had dd2. Diagnosed with tie just after birth- I specifically asked. Was snipped next morning on postnatal ward. She stayed asleep during snip! Bf going well. Am so glad I insisted on them checking for it. Am cross that it's never mentioned antenatally. I had read lots if books, done Nct and nhs classes and no mention at all.

another very useful link about tongue tie. the presentation has some slides with the cadavers of babies and fetuses so if you are feeling delicate you have been warned. Someone may come along and give the slide numbers of the ones to avoid later on.

DS had a posterior tongue tie that was missed by the midwife, breastfeeding HV and GP, despite me asking them to check for it specifically.

I was in a lot of pain, and had the classic wedge-shaped nipples with a compression ridge and bleeding. DS was putting on weight well (always around the 91st centile), so I was told that even if he did have a tongue tie, it obviously wasn't causing a problem - as if my pain didn't matter! At the 6-8 week check, I asked the GP to check for a posterior tongue tie (I could see it was an anterior tie). He poked DS's mouth with a tongue depressor while DS was screaming and said there was no tie. I knew he couldn't rule it out visually, but I felt so defeated and tired, I couldn't push him to check properly. Despite me telling him I wanted to breastfeed, the only help my GP gave me at the time was to tell me to switch to formula if it was too painful to continue, and that DS and I had had all the benefit of breastfeeding by that point.

The midwives and HVs kept telling me his latch was fine, even though they could see how mangled my nipple was after a feed. The breastfeeding HV was useless (the number of times I heard her telling people to use formula, it would have been easy to forget that she was supposed to be offering help with breastfeeding). They really didn't care as he was putting on weight. One even told me that even if the GP had found a tie, they wouldn't do anything about it. She showed me the advice they were given about tongue tie - 3/4 of an A4 sheet of paper that didn't even mention different types of tongue ties, and didn't have any advice on diagnosis, not even a diagram.

The day after the GP visit, I hired a lactation consultant. It truly was a last ditch attempt, and I knew I would be out of options if she couldn't help. I couldn't really afford it, but I didn't know what else to do. I was at the stage where I was dreading DS waking up in case he was hungry. It was a miserable place to be.

From the phone conversation she told me she strongly suspected a tongue tie, and when she visited she listened to my symptons, watched him feed, saw my nipple afterwards, felt in DS's mouth and told me she was about 99% sure he had a posterior tongue tie, but that it was difficult to feel it properly.

She gave me the details of the nearest few doctors who would snip the tie (none in my county, but I didn't mind travelling). She could have referred me to a couple, but the one who could see me fastest (Mr Patel at Kings College) needed an NHS referal. She really helped me, not just with her diagnosis, but by giving me a bit of strength and confidence back. Having someone on my side, letting me know I wasn't going mad, made a huge difference.

I got all the details from his secretary and his fax number. I then went to a different GP with all the info and the diagnosis, and told her I needed her to fax the referal that day. She told me that even if DS did have a tongue tie, I shouldn't really expect anything from having it snipped - that it wouldn't make a difference. She also mentioned the fact that DS was gaining weight well - more proof that his tongue tie wasn't a problem

She did send the referal though, and Mr Patel was great. He explained that it was common for tongue tied babies to gain weight initially - that for the first 3 months milk production is largely hormone driven. In fact, I had a bit of an oversupply which was working to DS's advantage as he wasn't having to try too hard to get milk. He told me that after 3 months some women experience further problems, as milk production becomes based more heavily on supply and demand. As the baby isn't feeding efficiently, the supply can be affected.

The snip itself took seconds. DS was very upset and angry, but fed right away and calmed down really quickly - in less than a minute, I think. There was a slight improvement initially, and I worried that it had all been for nothing, but over the next few weeks things kept improving. DS was 11 weeks when he had the snip, so I was warned that he would have developed lots of bad habits to compensate for not being able to move his tongue correctly and that it would take time for him to break those bad habits. He did learn to feed properly though, and within a couple of months it was entirely pain free (it was much improved within weeks though, just a bit uncomfortable).

He is now 11 months, and we are still going strong.

It makes me so cross whenever I read a tongue tie thread here. It seems crazy that something so easy to treat is still causing such a problem. I wrote to my GP's surgery, and the PCT, not just to complain but to urge them to review the way it is treated locally, and to stress the importance of better support and information for breastfeeding mothers.

Phew! that was long. Great idea Wholelottalove :)

I found this useful.

Ive read some of the links, and most of them suggest that TT is a problem into adult life. I'm really confused now as to what to do.
My HV is happy to go along with what DH and I want, so I think if we asked for a referral, we would get one.

The thing that really worries me is that feeding is going well. Is there a chance that having it snipped could make him go off feeding, or start feeding problems?

Sorry, I'm sort of thinking aloud here. On one hand, I don't want to mess up feeding, on the other, I don't want Ds to have problems when he's older.
Any thoughts on what I should do? If I rang a BFing councillor, would they be able to help?

Favorelles - why would it have to be under GA? Is it because your baby isn't a newborn anymore? Can't answer your other questions, I'm afraid. No harm in calling a BF counsellor I guess. Perhaps he'd have to relearn BFing if his technique changes, I don't know. It's good that feeding is going well for you though.

The lady at the BF clinic that referred us to the TT guy at the hospital explained to us that it was a very simple procedure (DD got it snipped at about 8 weeks), and didn't really have a downside to getting it done (i.e. it wouldn't make things worse), which helped us say 'Yes' straight away. DD was bundled into a blanket to stop her squirming and flailing her arms around and was held down (gently!) by 2 nurses while someone else snipped it. They told me to turn around so I didn't see what happened, but it was over in seconds. DD did scream and cry straight after but we put her on the breast straight away which calmed her down very quickly. There was a wee bit blood but that soon stopped (they make you feed to stop the bleeding and also placate them). She was right as rain and had a wee nap about 10 minutes later. I wouldn't hesitate to do it again if we ever have another child. And I'll be insisting on MWs referring me to the TT man again straight away if we have the same problems.

browneyes I encountered the same attitude with both mine as after initial losses they both put on weight well and it makes me so cross that the level of pain I was in didn't seem to matter.

Favorelles tricky one. AFAIK many older children and adults with TT don't have speech and other problems, but some do and the procedure is more serious as they get older (GA etc). I can understand you don't want to jeopordise your current good BF relationship. I guess you needto balance up the risks and decide for yourself what you prefer. Sorry, probably not that helpful.

Oh goodness, these experiences are really awful. I only thought to ask about TT as I'd read about it on here as being a reason for a poor latch and I was surprised it wasn't looked for by the paed immediately (particularly as I had specifically asked).

Lack of training does seem to be a problem though. My midwife said she was taught about it being a key thing to look for in case of BF problems, but her trainee who's currently studying to be a mw said they'd never been told about it during training and didn't really seem to know what we were talking about

faverolles The doctor who snipped DS's tongue tie only carries out the procedure if it causes feeding difficulties. He seemed to suggest that a tongue tie didn't necessarily cause speech problems, and to cross that bridge if it came to it. Tongue tie is very common, and doesn't always cause problems (as you've found with feeding your DS).

On the other hand, a friend who lived in France told me that in his area babies were routinely checked for tongue tie at birth, and if it was present they quickly cut it before the baby left hospital (with parent's permission). Feeding/speech issues didn't come into it.

Not that helpful, sorry, but it wouldn't hurt to check with an experienced counsellor.

Wholelottalove for all of us who have had to suffer needlessly.