Tongue Tie Support Thread?(113 Posts)
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:
NHS exaggerated latch leaflet (see page 10) this seems to help get a better latch:
Kellymom page on tongue tie:
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.
dh has tongue tie so as a salt I knew what to look for and diagnosed ds at two days old. He was a constant feeder, slow to gain weight, quite unsettled. Surgeon called Ann Lawson at rvi in Newcastle did his snip, and was very quick to see him. Nonfollow up though, and very limited support and knowledge from mw and hv. Both assumed I knew more than them...
By 10 weeks he had dropped four centiles, and as I also had 4yr old and no time to express (was rubbish expresser anyway) i slowly moved him to ff.
We had loads of help from bf counsellor, because I was pushy for it. However, even she had to concede i had tried everything that could be tried.
I think in most cases the surgery IS useful though, and is over in seconds. I would do the same again despite the poor outcome because at least now he can lick an ice cream!
Favorelles - if your baby is more than 12 weeks I'd wait and see if feeding is going well. They do have to relearn to use their tongue if they are a bit older and I've read it can making BF a bit more difficult for a week or 2. There is also the possibility it will need to be done with anaesthetic which I wouldn't want to do.
My boy is 8 months and 'unsnipped', feeding is OK now after a bad start.I wouldn't do it now if they offered (which they won't) The paed has said they will reassess him at 15 months and see if they think it needs doing then in case of speech probs.
I believe it's also possible that the tie can stretch out a bit on it's own or they snip it accidently when chewing a toy or something.
I will be very reluctant to have DS undergo the procedure at 15 months due to the GA. They will have to tell me he's going to have significant problems.
These are just my rambling thoughts about it from what I've read btw
Ds is 4 weeks.
That makes it more difficult to decide. I don't envy you favorelles. Can you get him seen by a specialist at one of the baby friendly hospitals, someone who can really tell you the pros and cons for your baby
Sorry faverolles not favorelles am trying to multitask and posting from phone
just a chip in, i am at work and shouldn't be on too long! I haven't read all the posts...
but DD had profound TT, couldnt move tongue, cut in 3 places ( anterior and 2 lateral ties) at day 6. Went on to BF for 8.5 months.
I am a dentist and have seen 2 adult patients ( 1 male, 1 female ) this week with TT, no problems, it doesnt always need snipping, some do, as it may result in talking difficulties etc, dunno if there is research- just what we were taught at dental school.
Btw- DD no LA, fed straight after ( nirvana, the best feed ever- profound change in nips after 1 feed!)
And no speech probs... BABABABABABGAGAGAG boooob booob boooby etc
I think whether or not you're offered treatment depends on where you live. I had DS at a hospital which was "out of area" and they checked for tongue tie on the day he was born. He was referred to a surgeon and treated when 5 days old, just a simple snip with a pair of scissors, he didn't even cry.
I BF and instantly noticed the difference. Before the snip, there was a flicking sensation when he was feeding, which caused a lot of soreness, and he was constantly wanting to feed. After the snip, the flicking sensation stopped and he fed much better and less frequently.
I spoke to a friend who'd had her baby at our local hospital. The tongue tie was picked up but she was told they don't treat it. She had problems with feeding him, spoke to her midwife and visited her GP but was unable to get a referral. With a newborn, she didn't have the energy to fight for an appointment and started FF instead. I think it's probably about money, like a lot of NHS things are...
orange and browneyes I'm not so sure about it being a money thing as I'm in France and we didn't get am auto snip at birth and my paed was very surprised the consultant she referred us to refused to do the snip (at 2 weeks). I really get the feeling (although I may be way out) that it's much more individual preference from the doctors' side, depending on whether they think a GA is necessary, their opinion on the necessity of BF and their perception of the likelihood of future speech impediments. I don't know how this subject is covered in training (if at all) or if there's much research been done on outcomes but it sounds like lots of medical professionals are working in the dark on this issue.
faverolles I don't envy your decision but I do wish you well whatever you decide to do. The deal breaker for us was the threat of a GA but when DS did his DIY job there seemed to be minimal pain so it might be worth exploring if it could be done without GA?
My experience was similar to browneyesblue.
I had terrible pain, my son couldn't stay attached to the breast, and milk went everywhere. My nipples were flattened after every feed, I had bad nipple blanching and I had shooting pain in my nipples that was twice diagnosed as thrush.
Seven people checked him for tongue tie before declaring him fine. He'd started out gaining well, but then his weight gain slowed by a third and I was feeding him hourly and trying not to scream from having my nipple licked repeatedly. Then I visited a baby cafe in Northampton (18 miles away) out of desperation having exhausted all local help. He was looked at and tongue tie was suggested. She said she couldn't guarantee my son had it, but offered to refer me privately or I could push for an NHS referral.
I opted for the private referral to Mr Griffiths at SUHT, and two days later DS was diagnosed with a posterior tongue tie which was then divided. He was 9 weeks old and I had been seriously considering weaning.
He's nearly 11 weeks now and it is easier. I don't think it'll ever be perfect as he also has an upper lip tie so can't make a seal with his lips, but I have been told that it'll improve further as his mouth gets bigger. It's a shame they don't divide the lip ties too, because they do affect feeding.
Especially since everyone said that with his weight gain in the early weeks (9oz a week) that feeding was going fine. Then I was told that around 8 weeks is when the milk production starts to become supply and demand based, and with a tongue-tied baby, they just can't get the milk out to stimulate the breast to make more. I definitely felt my milk supply was dwindling. I've been left feeling quite bitter about the 9 weeks of unnecessary pain I've experienced, and the weeks that it's taking DS to learn to use his tongue properly.
I am actually so upset about it that I'm hoping that if I can continue to breasfeed for a year or more, that I'd like to train as a breastfeeding counsellor so I can try and avoid this happening to other people.
faverolles - DS may be alright now, but if weight gain slows down or you're feeding a lot more frequently from week 6+, then it might be the tongue tie interfering. It's worth keeping an eye on.
Every time Ds feeds, my nipples come out looking lipstick shaped and White at the end - does this indicate that he could possibly be having problems even if I'm not getting any pain and he's growing?
Sorry to keep going on - this Tongue tie thing is all new to me!
DD is 5 weeks old and had her tongue tie snipped nearly 3 weeks back. We are still working on improving our latch - the exaggerated attachment leaflet has helped us. We feed regularly, at least every 3 hours. I have not been putting my fingers in her mouth to try to tease her tongue out more, as was advised at the TT clinic...am I risking the TT reforming if I don't do this???
Sorry - just remembered as well (may or may not be relevant )
When feeding my other three, when they went to sleep at the breast, and I pulled my nipple out, it would be really long. This never happens with Ds - it seems to be the same length, but a different shape!
Can anyone recommend a helpline where I could chat to someone about this to get an expert opinion before I see the dr next week? Thanks
My DS had his cut privately at 21 weeks, quite late. We had the typical problems from the start which we were able to improve with exaggerated attachment. I'm terrible at asking for help so at this point decided that "better was good enough", until at 4mo I knew that it really wasn't - I felt like a failure because bf still wasn't easy etc., and wanted to give up.
I really wish I'd investigated it sooner because his was a posterior tie and couldn't be seen. Who knew BF would be such a learning curve?
Different pov on TT in case it helps - I was diagnosed at age 11 after years of speech problems and snipped under GA. I had to learn to use my tongue properly after that but it made a huge difference to my life. Didn't find out til recently how much trouble my DM had trying to breastfeed. I'd definitely recommend getting it snipped asap.
My DS had a moderate TT snipped at 3.5 weeks old. We have had severe clicking sounds and 'flicking' of my nipple in his mouth, leaving me with painful, misshapen nipples. I know some mums have had almost immediate relief after having the TT snipped, but sadly, that hasn't been the case for us.
Over the last week, I have been trying to do the exaggerated latch technique, and need to find some ways to encourage baby to stick his tongue out over the gums, because despite the fact that he can move it now, he doesn't...
Does anyone know where I can get this type of specialist support in person? While the breastfeeding groups I have attended have been invaluable so far and helped identify the TT, I need more specific hands on support than being supported with the usual 'tummy to tummy' and 'nose to nipple' support.....
Is there a website with specialist advisers? Are these lactation consultants?
scubamummy - we were only advised to rub under the tongue if it looked like it was resealing, not to try coax the tongue out...
If your nipples are coming out white and lipstick shaped faverolles then I'd get it snipped ad he's doing YOU damage even if he is feeding well now.
habzamaphone sorry to hear you had such a hard time too It's great to hear that you want to use your experience to help others in the future.
I just wanted to say, don't give up hope. I remember writing on this very forum that I didn't think DS would ever have a perfect latch, and I accepted that I might always have some level of discomfort. To be honest his latch is not completely perfect, but it doesn't matter. Feeding is 100% pain-free, and it doesn't cause him any problems. He also appears to have a lip tie, so I flick his top lip out when I remember, but that's more out of habit than anything. I think it took a couple of months to get to the completely pain-free stage.
I remember how angry I felt about all that wasted time, and all the pain I went through needlessly, but that is a distant memory now - DS is 1 next month, and I could never have imagined reaching that stage before his tongue tie was divided. I do still get angry for others when I hear their stories though.
Fenouille I think you may be right about it being down to the individual doctor. Since my initial encounter with my less-than-understanding GP, I kept trying other GPs at my practice until I found one that suited me better - a mother of 2 who breastfed
I don't know of any helplines that give specific tongue tie advice, but maybe the usual NCT helpline (0300 330 0771) or the Breastfeeding Network (0300 100 0212) could help.
I also got email advice from LLL) - they also have a helpline. I think they know a lot about tongue tie, but can also give some great positioning advice. I hired a private lactation consultant (it was the only thing I could think to do), and she was fantastic. I got her details from [[www.lcgb.org here
Ooops - that last link went wrong: La Leche League
typing 1 handed and will try and get back on later, but for specialist help podmumlet might be best to try lactation consultant who also specialises in TT division try www.lcgb.org/consultants_tongue.html
I am hoping it'll get better browneyesblue but I'm pretty sure his upper lip tie is holding us back. He can't flange his top lip properly and therefore can't make a seal. I'm getting so fed up of re-latching him a million times and getting covered in milk that sometimes I really feel like giving up. Constantly having to take him off and re-latch him is actually making my nipples really sore, and because he can't make a seal, if I'm not careful he ends up just sucking the tip of my nipple.
My DD1 has a tounge tie, it's right to the front of her tongue. We were told that she might have feeding issues & possibly need speech therapy when older but no one suggested it could be snipped
She is now 9 is very talkative & has had none of the predicted problems, breatfed til 1 yr. So don't worry too much if you choose not to do anything.
Thanks theborrower for bumping the thread and directing me here. To cut a long (and painful!) story short... After three weeks of struggling to bf my DD, being told by numerous bf counsellors that the latch was perfect, despite cracked, bleeding nipples that would be misshapen after a feed, (see my other thread 'struggling to get the latch right') a lactation consultant has said she thinks my DD has a posterior tongue tie. She had been checked for tongue tie several times and I was told she didn't have it- apparently it is trickier to spot than normal tongue tie? She has referred us to someone to get it snipped, which hopefully will be soon as I am finding it increasingly hard to breastfeed through the pain.
I'll have a read back through the other posts, I'd be interested to hear other people's experiences.
Thanks for the link wholelottalove.. Much appreciated.
I am definitely going to be phoning one of the consultants to explore whether there is more we can do...
podmumlet Until you can get specialist advice it might be worth just sticking your tongue out at DS! This was recommended to us by the LLL lady before DS's TT was diagnosed, as she said that babies are great at mimicry.
DH spent days sticking his tongue out at DS and almost as soon as his tongue got free he started sticking it out too. I don't know whether that was a sheer fluke but it might help you feel like you're doing something while you're waiting for a specialist contact.
I had painful nipples from day one and asked for help over and over in the hospital but received so many different opinions before being told not to worry as she was latching fine. Took her home and nipple pain got worse and worse over the next week. Got to the point where I was sobbing with the pain, nipples were bleeding, cracked and even a little infected. Finally called HV in tears on new year's day. DD was 8 days old. HV came round, had a look, then arranged for me to go back to the hospital that night and speak to the breastfeeding counsellor. She was absolutely brilliant - took one look at my boobs, grimaced and told me to start expressing immediately and give myself a chance to heal up. She also told me to see her associate on the following Monday who would be able to confirm her suspicions that it was a TT. Sure enough... Was referred to the specialist and was lucky enough to get an appointment in the middle of a blizzard and had it snipped at 13 days. I had to continue expressing for 5 weeks and have a course of antibiotics to clear up the infection (not mastitis, just in my nipples) Breastfeeding consultants were fantastic, one even gave me her home number, and came and sat in my house and helped me get her back on after 5 weeks on the bottle. She's now 14 months and still bf. So glad we had the help we did. But I was shocked to discover there are only 3 bf counsellors to cover our whole region, and most MWs and HVs aren't trained about TT at all.
Makes me so and that so many people are suffering, desperate to do the best for their children and BF, and are not getting the support. I had an emCS (opposite from the drug free natural birth I had wanted) and was already feeling like a failure for not being able to birth my own baby, so when I felt I couldn't feed her either, the last thing I needed to hear was people suggesting I just give up and FF. I am eternally grateful for the help I received.
dorcas I really feel for you, this is the situation I was in at 4 weeks. I didn't think I could do another day. After the division, DS fed much better and I thought we were home and dry, but then after a week or so he went chompy again, it got better, went downhill again, mastitis, better etc etc and suddenly something has clicked and I just realised this morning I'm pretty much pain free (he is 10 weeks now). I think on one of the weeks he was chompy I was almost as sore as I was pre-snip for a day or so but in the main there has been an improvement with dips if that makes sense. I am cautiously optomisitc now as between 10-12 weeks was when DD finally got it as well (although her TT was only snipped at 8 weeks).
I suspect both mine have issues with their top lips (DD has big gap between front teeth) and I know DS has a high palate so I do think I was always going to have issues even with the TT snip until they got bigger and their mouths got bigger. On saying that, DS was retracting his tongue at feeds up until this week, now he still isn't opening his mouth wide but with exaggerated latch/nipple sandwhich and the fact he's now using his tongue (he tries to latch now by licking my boob and opening his mouth about a cm so it takes patience to wait for any sort of gape).
Sorry a bit rambling, everyone is different so I can't say for sure if things will be easier for you. I really hope you get your referral very soon - I would nag and make sure they know it is urgent. Good luck
I also second perservering with sticking tongue out and down for them to mimic. I posted the exercises I was given on another thread, will try and find them, although we gave up with DS as he wasn't playing ball with doing the exercises.
Would really appreciate seeing a link to those exercises wholelottalove. So far, baby is imitating big cheesy smiles, sort of gaping (but still not wide enough), but just won't imitate sticking his tongue out..
Aha, found it: www.mumsnet.com/Talk/breast_and_bottle_feeding/1102029-Posterior-Tongue-tie?pg=2 the exercised were on the 2nd page of the thread.
About the tongue sticking out - my DS didn't do it either (although he was much older and set in his ways). I got a bit despondent about trying the mimicry but other family members really helped out - everyone was sticking their tongue out at him! He eventually did it - thus proving he could.
I know you're not supposed to use dummies but other things can also help... DS was able to start BLW soon after his op and that made a big difference, so I was thinking maybe teething rings, or toys to chew on/mouth might be good for the younger babies? Anything that gets them moving their tongue will help. Just an idea.
Thanks wholelottalove. Hope things are continuing to improve for you. We have now had it confirmed that it is a posterior tongue tie, DD has very little mobility in her tongue (bless her!), we are booked in for getting it snipped tomorrow. I can't believe it has taken so long to get this diagnosed- and it has only been diagnosed because I have consulted private lactation consultants. I have had some lovely support from NHS breastfeeding counsellors but I can't believe that they do not know to check for posterior tongue tie. Surely this is something that could be checked for at birth? Anyway, I am hoping things might start to improve after it has been snipped. I am trying not to expect an overnight miracle, but things certainly aren't going to get better if we don't get it done and at least I will know that I have tried absolutely everything to keep breastfeeding my daughter. Anyone have any advice/ tips about increasing our chances of successful breastfeeding after this procedure or is a lot of it down to luck? I get the impression that some people see an instant difference and some don't.
Fingers crossed for you. I think lots of feeding and doing the tongue exercises if you can and your DD is happy to do them may help. Ask the LC at your appointment too - they may have some more ideas. I believe TT used to be checked for at birth back in the day but there is little training of MW or recognition of the condition or that it can interfere with BF these days IME. Posterior TT seems to be the worst as it has to be felt and isn't always as obvious, but the LC I saw said it can actually cause the most issues with BF. My DS like your DD had very little mobility in his tongue before the snip.
I think to an extent it depends on how it heals and I think it can also grow back. I think maybe DS's healed tightly as we had such an up and down time after the snip.
To give you hope, I am cautiously declaring us pain free finally (he is now 11 weeks) although it may still go downhill again, I think we've turned the corner. DS is also stacking on weight and on his line on 75th centile so I think we've come through the other side now.
Let us know how you get on.
Bump for CJmommy
How are you getting on dorcas111 ?
We are seeing lactation consultant tomorrow. I am convinced DD has a posterior TT;
- Dropped 3 centiles
- Clicking noise when feeding
- Lipstick shaped nipple with white end
- Can't move tomgue to roof of mouth
- Can't move tongue passed inside of bottom lip
- Constantly feeding (and i mean constant!!)
- Bottom lip slips up when feeding
- Sore ish nips
Does this sound like a TT?
I have come to the conclusion that my poor DD is permanently hungry . If I give her a bottle of EBM (3oz), she has a lovely contented look after which she has never had following a bf.
She is 11 weeks now, so does that mean she will need a GA to get it sipped? I so want to carry on BF but can't pump anywhere near enough to continue topping her up at each feed!
Hi, sorry it's taken me a while to update. We had the tongue tie snipped and things have been improving I think, although it is very up and down. Sometimes she latches on well, but sometimes not-she still isn't always using her tongue and it can still be quite painful. To complicate matters I have got thrush in my nipples which is also very painful and it makes it hard to be sure how much of the pain is from the latch and how much the thrush, if you see what I mean. We are doing the exercises and I am persevering, although it is hard sometimes. I just want things to start getting easier! Any advice would be much appreciated. Also, has anyone else who has had their babies TT snipped found that improvement was gradual rather than instantaneous? I'm just wondering if there is still hope?
Actualy WLL I've just noticed that you had an up and down time too, do you think that things could get better for us too?
dorcase111 it wasn't instantaneous improvement with ours in that we didn't notice any improvement in the amount of top up she was getting over the following days, but she did seem to have a stronger latch and didn't get tired out as she did before, iyswim. However, I'm not the best person to ask as it was a few days after the TT snip that I stopped the regime of BF/top up/express and went to only BFing followed by top up twice a day and just bottles the rest of the time (and no more expressing!). I think my milk supply was
totally buggered really affected by this point, so who knows if it had gotten better if I had stuck at it for a few more weeks. But I'd had enough by this point.
So, bumping for you and hopefully someone else can help. Hang in there.
CJMommy hope your appointment with the lactation consultant goes well and you get some answers. I'm no expert, but it does sound like it could be, certainly a problem with a latch. Hope you get some help.
Sorry it has taken a while to come back - DS has been poorly and missing feeds which meant the dreaded mastitis rearing again - I am so prone to it that a bit of engorgement can set it off.
CJmommy how did it go today? IM(limited)E it does sound like TT. IIRC the LC I saw was happy to do them up to 12 wks. Just realised you saw someone today - how did it go?
dorcas well we definitely had v up and down time and not 100% even now. I think it helps as they get bigger. It can take thrm a while to get it and then sometimes it seems 2 steps forward and one back. All I can sai is it did get better for me both with dd and now with ds so worth perservering for a bit if you are happy to carry on. Hope it does improve for you, you are doing so well to get this far.
yikes am 1 handed sorry again for typos
Well, I think today went pretty well. The LC agreed with all the signs/symptoms etc and had a look a DD's tongue. She said there is definately a problem but couldn't see anything that could be 'snipped'. However, she has referred DD to another LC who does snip TT's regularly for an expert opinion; hopefully we should see her within 2 weeks.Although, I'm not sure what will happen if she can't snip it?
In the meantime, I need to supplement which I am going to try to do with EBM. They have lent me a Medela Symphony for a couple of weeks to help boost my supply.
However, they said to supplement via cup feeding as this will aide her tongue movement............we tried this tonight and it was a complete disaster!! She won't keep her head still so it ends up everywhere! Both DH and I tried and swaddled her but was hopeless so ended up giving her a bottle of EBM which she took like a dream.
Does anyone have any tips for cup feeding?
DD had TT snipped today. She fed straight away but not sure that I noticed any difference? She's now refusing to latch and screaming so we've given her some calpol, a bottle of ebm (as advised by LC)and DH is trying to get her to sleep.
I posted waaaay above with my experience, but wanted to reassure you a bit (hopefully).
DS had his TT snipped at 11 weeks. I didn't notice a huge difference right away, but over the following weeks it did keep improving.
He fed initially, but did have a very grumpy night. I gave him Calpol, he eventually slept, and I gave him Calpol the next day too (just in case). He bf the next day, and seemed fine from then on. I was a bit of a wreck though, and watching his every move
Hang in there...
browneyes Thanks for that. I've just re read your story and it's not disimilar to mine. I'm quite angry that i had been asking about it from when DD was 4 weeks and we had to get to 11 weeks before anything was done. All those weeks of feeding and trying to establish a supply and now we're back to square one!
Am feeling a bit low today, just fed up with the continual feeding and expressing...but will keep going. Think I was hoping that I'd see some improvement, I know it can take some time though. May give DD some calpol today, thinks she's still a bit grumpy!
CJMommy Hi, just wanted to check in - sorry to hear that you're feeling low today. I know how tiring it can be continually feeding and expressing - god, expressing sucks! and how sometimes you just get fed up. Just wanted to say that you've done amazingly well getting this far, and that I hope you see an improvement soon.
My NCT breastfeeding counsellor told me yesterday my 16 day old has tongue tie. Waiting for midwife to come today with referral form - how long does referral take on average & will they snip it then or make another appointment?
I lost 1L blood after delivery & was told this had affected my supply & I had to top up with formula because of >10% weight loss day 3 - I didn't want to do this but was so weak felt there was no other option. I feed all day practically and top up about 4-5 times (although yesterday only twice - hoping to reduce as much as possible & EBF soon). I asked for tongue tie to be checked in hospital as my dad had it - the paed just poked her finger in, didn't look underneath. This is despite sore nipples from the start, latch checked & ok'd by loads of midwives, constant feeding, shaped nipples & low weight gain. Plus he also struggles to feed from the bottle and lots of it runs out his mouth. The BFcounsellor said thry doctors had put together blood loss & weight gain & assumed supply problem but she says supply is fine - just needs more stimulation. I'm annoyed because a friend who had her baby the same day, same hospital and also lost >10% was taken back into hospital and helped to feed / express whereas I was just told to top up with formula. Feeling like I could make enough milk for him has been making me so blue, I really hope the doctor will be able to see/treat the tongue tie & that it will make a difference for my little one.
Anyone else having horrendous nights of feeding, baby will only fall asleep on me, try & put him down & he's awake again for feeding - the cycle goes on for hours and then I feel guilty for keeping him at the breast when he's struggling.
Hey CJmommy how are things? Just wanted to echo what theborrower said - you've done so well. I hope you are feeling better/feeding is going better.
Hi LauraRose congratulations on your new baby son I think referral time depends where you are in the country. I know if you go private they tend to snip it there and then. Really annoying the paed didn't look properly - this happened to me too, even though DD had TT and I asked them to check. Some of the all night feeding might be because of your DS' age - they want to be close etc. Falling asleep on you is definitely very normal at this stage and instant wake up as soon as you put them down also normal. Hope you get your referral through soon.
I was bottle feeding DS breast milk with formula top ups at 2 weeks and he is now EBF and no bottles or top ups despite his TT still not 100%
Brief update on us is that I still seem massively prone to mastitis and a little bit of engorgement triggers it off. DS still has a rubbish pinchy latch which is a tad sore again the last few days. He is also feeding quite frequently and seems to have gotten into the habit of lots of little feeds so he's on for 5-10 mins max and often only one side per feed. V annoying at night as he fed 2 hourly last night and I couldn't sleep through it Am pretty tired and with DD to deal with too I'm starting to wonder what my options are. FF seems too much of a faff and I'm worried about giving bottles and buggering up his latch altogether. Hopefully things will ease off soon.
Today has been much better - she actually seems to be going 1.5-2 hrs between feeds . Prior to wednesday, it has just been one long 12 week feed (or so it seems). Latch on the right is still sore and it's really difficult to get her mouth to open wide enough but we're persevering.
I saw the BF co-ordinator today. She took one look at DD and said that she looks lovely and healthy, in proportion and not to worry, despite dropping 3 centiles. She also said to stop the ebm top ups that we have been doing for the past week and to just concentrate on bf, which I am pleased about......a much happier day for us both
LauraRose. We were referred last friday, the LC called me on monday and we got 'snipped' on wednesday. I hoping to see an improvement (I think I already have!)but I am very familiar with the cycle....hope you get your referral soon.
WLL It's so difficult anyway without another DC to think of! My poor DS is so good really and thinks mommy is just a milk maker as it's all I seem to do. I'm not sure what your options are but I have nearly resorted to formula several times but you're right - it is such a faff and so much easier to bf!
CJMommy it's great to hear you've had a better day. Hopefully things will continue to improve. As your DD's tongue tie was snipped at about the same time as my DS's, you may find, as I did, that things will shortly appear to slip backwards a bit with feeding. Fear not - it's probably just the 4 month growth spurt, and it will pass.
The good news is that your DD's mouth will grow along with the rest of her, further improving her ability to latch.
LauraRose Congratulations on your new son If the midwife didn't give you an idea of referal times, just give her a call and ask. It sounds like you've had a hard time so far. Well done for persevering - I know how difficult it must be, and you've done amazingly well to get this far
Is there someone who could take over a night feed for you to give you a bit of a break? I expressed one feed a day so that my husband could feed my DS during the night, which gave me a bit of extra sleep, and gave my nipples a break. I would also recommend a sling during the day. It may help your DS settle for a little longer, and you can have your hands free to get on with things.
I really hope your DS gets seen soon.
WLL Growth spurt for you too maybe? Again, maybe a sling would help. I don't know if it was just coincidental, but when I started using a sling, DS seemed to sleep a bit longer, so was going longer between feeds. Then when he did feed, it was for a bit longer than 5 mins as he was hungry. My LC showed me how to finger feed DS using a syringe and feeding tube taped to my finger, as it was closer to bf than a bottle. My HV was horrified when she found out, but it worked for us. She said it was a choking hazard as the milk was forced into DS's mouth. I tried to explain that I wasn't actually depressing the syringe, and that he was sucking the milk out on his own, but she had stopped listening. It may be worth asking about it though.
I wish MN had a little medal smiley - I found it hard enough and I only had DS to worry about. You're doing it with a DD to care for too!
Hi, just wanted to add my story. Have posted on other threads about this but thought anyone reading this one might like to know - my 20 week DD put on weight fine for first 3 months (EBF) but feeding was always a struggle, especially in first few weeks where I would literally cry at every feed. Had midwives, bf counsellors and HV watch me feed and although I kept saying, 'there's a clicking noise, doesn't that mean TT?' no one listened. At 4 months she was starting to lose weight and being very fussy on the breast, pulling off and crying and not going back on although obviously still hungry. A local bf group gave me the number of an infant feeding specialist who listened very carefully on the phone for about half an hour and then saw us a few days later. Within a minute of watching me feed she said, 'there's a clicking sound, must be a TT' and when DD had finished, she had a quick look and hey presto, the posterior TT was diagnosed. She said she didn't think there was much point in referring for s snip at this stage as we'd made it so far, but I disagreed and got a referral from my GP the next day. 2 weeks later we were seen at Southampton General and they were horrified at my story and couldn't believe it hadn't been picked up sooner. One of the bf counsellor ladies there said she saw the TT as soon as my DD smiled at her (little charmer that she is. DD, not the bf lady...) They spent a long time talking to us and assured us that there was no downside to having the snip. DD would probably take a few days to relearn how to use her tongue but they had seen many cases just like ours with no issues.. DD was taken, wrapped up and had the snip with a pair of blunt scissors. She
was away from us for a max of 5 minutes. When she came back she
was fine, no crying and the nurses said she'd been very brave (there
was a single tear in the corner of her eye... ). She latched on straightaway and fed for a few minutes. I have to admit I was expecting a miracle as it has always been uncomfortable for me to bf, but although not a huge difference at that point, over the past few days I have definitely noticed that she has been taking more without getting tired. (it's now 4 days post snip) Hoping it will continue to improve - DD has never been able to stay on the latch on her own so I have always had to feed 2 handed - holding the boob in her mouth. Hoping that one day I might actually be able to sit with her in the crook of my arm feeding one handed! (and that she might go longer at night.... <weeps at the thought of 4 month regression continuing for
much longer> )
Anyway, sorry for long post, just wanted to add my story and reiterate that if you suspect TT just keep banging on about it till someone listens. Also that it's 6 months before they have to do a GA and even then it's decided on a case by case basis. Good luck to everyone out there with similar stories
Thanks for adding your story Dreemagurl.
Yep, I'd also definitely reiterate to everyone that if a TT is suspected you bang on about it too until something is done. I know it's hard when you're the tired mum and we all trust in the HCPs around us who are supposed to be doing their jobs, but it sounds like they are too often missed or dismissed.
Grrr, you know I'm still fuming about it? Was speaking to a pregnant friend today and she recently attended an antenatal class on BFing and they seemed to cover a lot, including problems such as TTs. They seemed to reassure people that this would be checked for straight away, but my friend piped up with my story saying that "Errr, my mate didn't get it diagnosed and it wasn't done until 8 weeks...". Why am I so mad about this still?
Well, saw the GP today - it's policy to be referred to them if 3 centiles dropped. She basically told me that despite her looking wll, she will have to refer her to a paediatrician for failure to thrive if she does not gain significantly this week.
We had a really good weekend WRT feeding - now going two hourly as opposed to constant. However, today appears to be the start of 12 week growth spurt time so it has been pretty much continuous for the last 6 hours. Great isn't it, you finally start to feel like you're getting somewhere then you get a bloody growth spurt!! The GP didn't help by saying that she should be going a lot longer than 2 hours between feeds - I thought we were doing ok too .
Part of me now wants to stop bf . It just seems like a never ending rollercoaster. I'm neglecting my poor DS (3)and snappy with DH. .......think I need a x
theborrower I understand why you're still mad. i appear to be getting more angry about it too - I just feel that we've gone through 8 weeks more difficult feeding if I had been listened to when I first asked about TT. I could now be at a point where bf was lovely and easy and not the worry and drain it is now!!
Hey ho! Will probably feel better tomorrow.
CJMommy have a - I'm having one right now
I'm mad because the first 2 months of her life were so difficult - I keep thinking "What if?", and how perhaps we could have been saved 2 months of misery. What if they had realised she was breech when I was pregnant and not only when I was in labour and then needing an EMCS? (I keep hearing that EMCS can make BFing difficult). What if the midwives had snipped her TT when she was in hospital? (several midwives said she had one, but they all disagreed on whether it was an issue or not).
And also what if I'd kept on trying for much longer after the TT snip?
I'm mad because I felt/feel so let down, and mad because other people are going through it too! There are clearly too many people getting missed.
By the time we got to 8 weeks (when TT was snipped) I thought "We're supposed to have BFing established right now, it's supposed to be easy by now" but we were only getting started. My friends seemed to have the hang of it, but I was in this crazy world of topping up and expressing. I couldn't face 8 more weeks of it, so stopped trying to BF as much and cut back to twice a day on the breast and FF rest of time.
And I'm sad that we didn't have the BF experience I wanted/thought we'd have when I was pregnant.
Incidentally, DD has now stopped taking the breast completely - our mini BFs have dwindled, and at 7 and a half months we have now officially stopped Although I've also got to say, somewhat relieved. Not sure why.
WLL my DD also has a pinchy latch, three weeks after having her TT snipped. Do you think it is a habit that they got into when feeding with a Tongue tie? I'm at a loss as to how to stop her doing it.
DD has a pinchy latch too but it has eased slghtly. I can live with it knowing that she is now getting more milk, is more settled and the 12 week cluster feed has ended! I find that her latch improves with the duration of the feed. Now I just need to wait and see if she gains any more weight - friday is D day!!
Hi everyone - so glad I found this thread and thought I would share my experience and also ask if anyone could give me a bit of help as I am now truly struggling with how to proceed with feeding.
I had my baby boy just over three weeks ago and had actually written in my birth plan (amongst other things!) that I wanted him checked for tongue tie as I must have read something about it while pregnant and it stayed with me. I also said that I didn't want my baby fed formula and wanted help to be able to breastfeed.
Anyway, in the delivery suits, literally as he came out and was screaming I saw that he had a little heart-shaped tongue and I said to the (3) doctors and (2) midwives that he had a tongue tie. I was pretty out of it and no-one really paid attention. That day I had to see a number of doctors (in fact around 4 paeds) as well as any number of midwives (I lost my last baby and was being carefully monitored) about various things and I told each one about the tongue tie and asked them to help me breastfeed.
I was repeatedly told that they didn't believe he had a tongue tie... but no-one could help me get him on the breast either. After around 12 hours of this, I was being told (more and more firmly) that my baby needed to be fed formula (which for various reasons I did not want to do). I finally gave in as we had been trying all day (different things, I also rang some helplines, was trying to track down a lactation expert), his blood sugar was falling (he is a very big boy) and I also didn't seem to have anything to give him. He would not go on the breast at this point at all.
Three days later we met a lactation consultant who said straight away that he had a tongue tie. We had it snipped the next day (by the lactation consultant who is also a midwife and is trained to do this) but he still wouldn't take the breast. Meanwhile I am starting to pump but not getting much (around 8-10 pumps a day and maybe 50 slowly increasing to 100ml in total over the day). The LC thinks that he still has some tongue tie so snips a little more a few days late. He takes a couple of days to recover from this each time (he was taking the Breastflow bottles but reverted to the NUK teats we had from hospital which were clearly easier to suck from).
Meanwhile he is thriving on the formula and putting on weight etc. and very happy on it... and I am desperately pumping, taking fenugreek and blessed thistle, and now, for a week Domperidone, and last Thursday he finally breastfeeds.
However, his latch is a bit pinchy (but I can bear that) but I was giving him a bit of formula before giving him the breast (otherwise he would get upset, screaming etc.) but he seems to fall almost to sleep as soon as he has the (breast) nipple in his mouth and does about 7 sucks and rests for a moment or tow and then another 7 sucks and takes ages.
The LC asked me not to give him formula first, so I tried again on Monday afternoon and he did take the breast... but he then proceeded to feed FOR 7 HOURS STRAIGHT and was still hungry and crying at the end of it (I stopped him) so I did give him formula as I was actually going nuts by this point. He then did the same thing yesterday and once again, after 6 hours I gave in and gave him some formula.
If he has had some formula he will leave the breast himself after about 15-30 mins and he will also sleep afterwards. Otherwise it is endless, endless sucking and he won't sleep (unless a nap on me) presumably because he is hungry.
I also worried that he was going to get dehydrated as yesterday I had less wet nappies than usual and he didn't poo (another reason I gave him some formula).
I suppose I asking whether there is light at the tunnel and whether at nearly 4 weeks my supply (and his ability to feed effectively) are ever going to match up when he is huge, as I am getting pretty low from the relentless of it all and wonder at what point I accept that formula is going to be the only way forward for us...
Sounds like you have really been through the mill. I can't believe that not one of all those docs and midwives didn't listen to you when you saw he had a tongue tie, particularly if it was immediately obvious to a Lactation consultant and you were having clear problems getting him on the breast
I don't think I can offer advice, but I wanted to bump this thread for you - it may be worth starting another thread looking for a way forward or sending a private message to tiktok who is a trained BFing Counsellor who posts a lot on this board - she knows what she's talking about and should be able to offer some advice or point you in the right direction. It sounds like you need a clear plan with the feeding.
hope that helps.
Thought I would share my experience of posterior tongue tie, now that we have had the snip and BFing is all fine (finally). Hope it will be helpful for someone as at the time I was desperate for help and had never heard of tongue tie and had no idea it might be why we were having problems.
DD is my 2nd child, so luckily I knew that the problems I was having breastfeeding were not normal. The first week wasn't so bad, painful, but bearable and I kept thinking it would get better, but it only got worse. It got to the point where I was in tears with the pain at each feed and I could tell DD was getting frustrated too. These are the symptoms we had:
-baby not able to latch properly - going on and off constantly
-lots of clicking noise and chomping
-excrutiating pain in nipples and breast during and after feeding
-baby not satisfied after feeding - feeds only ended when I had to wrench her off as couldn't take the pain any more or when she fell asleep with exhaustion, only to awake in hunger a few minutes later
-very windy baby
-hardly any dirty nappies
-nipple would come out compressed with a white ridge
DD was gaining weight ok, so no-one was really interested in my pain, plus it was Xmas/New Year, so everyone was on holiday. We were dismissed by the MW - HV and GP were uninterested, breastfeeding counsellor from hospital suggested trying feeding in rugby ball position and having a hot bath. Infant feeding specialist from hospital when I finally got her on the phone just told me to get anti-biotics from GP for mastitis.
In desperation paid fortune for lactation consultant who diagnosed posterior tongue tie and thrush. Inefficient feeding was also causing blocked ducts. Went to GP to get referral for dividing TT and treatment for thrush (which he gave bad advice on and we ended up having to go back and get treatment again as it got into the milk ducts and was agony - only got this sorted on advice from Breastfeeding Nework). Referral for any NHS clinic in London was several weeks so in the end paid £80 to see Mr Graham I Smith at Kingston Hospital and get seen more quickly (http://grahamismith.com/about.html). Procedure itself was done at 4 wks and was quick and apparently easy. Feeding didn't really improve for about 2 weeks (though was made worse by continuing thrush problems). I coudn't cope and was determined to start FFing, but then DD refused to feed from bottle. So we persevered and within 3 wks of the snip everything was pretty much normal.
DD now over 3mths and doing fine.
Thought I'd update (and bump the thread for anyone else who might need it)
DS started to have a few problems feeding at about 4/5 weeks - I was having some pain when he fed, he would fuss around.
HV told me to see the dr to get a referral.
The Dr was awful. Really dismissive of the problem, and didn't believe I could feel that DS feeds differently to my other dc. He also felt that it was a non-issue that I couldn't really relax when feeding - I have to concentrate on ds's latch and the position of my boob.
Saw the paed. today who was lovely. First thing he asked me was if DS feeds differently to my others. Told me DS has a significant TT, and has referred us to the maxillo facial clinic to see the consultant who will decide whether to snip it.
This has made me feel that maybe there is a need for more TT recognition in brand new babies. All the cases in this thread, and several people I know in RL all had problems that could have been sorted before it even was a problem iyswim.
Is there anything I (or anyone else) can do to raise awareness of this? (I'm aware that in the scheme of things, this isn't a huge issue, but how many people stopped bfing, and how many are struggling right now, when it could be checked for routinely and problems prevented right from the start)
CJMommy, WLL & Browneyesblue thanks for your messages.
I was told on Monday 21st our appointment will be 31st March - I was so desperate I offered to come to the hospital & wait but they said that's not allowed we are counting the nights to our appointment - still feeding all the time (plus 4 x 90ml top ups a day - hoping to borrow a breast pump from NCT to get my supply up). Hes has so little sleep (and me too) - only 2x 1/2 hr naps since 7am. Nights are really hard - he'll go in his crib for maybe 1&1/2 - 2 hrs, then I can't get him to go back down after - in desperation I've done so co-sleeping but hate how scared it makes me feel. I have so many hopes pinned on this Thursday so its reassuring to hear how things have improved for you Amcamc.
Lucy101 - I feel for you - my little boy is quite big too (8lb11oz at birth) and he could feed all morning or afternoon from me and still be hungry for formula - he gets so frustrated at the breast sometimes - arching his back, pushing off his fists so he's nowhere near my nipple - he aslo sometimes wakes and cries for a feed, then is asleep after a few sucks so I think he just wants the comfort - I hate to admit it but one of our best nights was co-sleeping when he could have access to the nipple all night - didn't have to give formula at all that night. I'm also worried about dehydration - I'm always checking his fontanelle & nappy counting. The midwife told me to do 45mins on breast 1, then 15 or o on breast 2 then top up, but the NCT breastfeeding counsellor said as I'm feeding so often just keep swapping as the first milk comes easily and will settle him, and he will get the hind milk due to frequency of feeds. I'm having some small breakthroughs after I started massaging my breasts after each feed (from Aptamil website!) e.g. let down on non feeding breast, lots of swallowing noises, milk even running out his mouth (I needed a breast pad the other day and was so happy I cried!!). THe NCT breastfeeding counsellor has been a godsend - maybe try your local branch? They've also lent me a supplimenter system (and bottle & 2 tubes that tape to your breasts) so you can give a top up and still get breast stimulation.
Love to everyone - hope life gets a bit easier xx
faverolles - I'm thinking of writing to my hospital - my care was otherwise excellent so perhaps they could update staff in identifying tongue tie? My hospital have just taken on the breastfeeding guidelines so might be open to these kind of changes. If you start a petition I'll definitely sign it x
Has anyone had a TT snipped in Yorkshire/Derbyshire? I think my DS has a TT and the MWs here told me when they checked that they don't snip them here. I know this from experience as my DD had a bad TT and they refused 7 years ago, saying that TT made no difference to bf. I'm going to get him weighed tomorrow and will ask again (for the 5th or 6th time) for them to look but I'm not expecting a great response.
I think he has TT because he's 7 weeks and has never been able to put his tongue over his lip. He can get it over his bottom gum, but that's it. When he cries it's heart shaped with a notch in the middle, and th erest of the time the tip is flat. He's also losing his latch a lot (this seems to be getting worse) and it sounds like a bit of air getting in as he tries to grab on again. (like a straw at the bottom of a drinking glass iyswim). My nipples are both sore, and have been since he was born. There's no blisters or cracks, but they get that lipstick tip shape after a feed, and get bruised and pink.
He's a generally happy baby, gaining well at the last check so the problem is with me not him, and the responses I've got have ranged from "well they don't snip them here anyway" to "is it bearable?" (if it is then carry on!) with a general dismissal as the latch is good.
Does this sound like TT? I'm working myself up about it and have almost convinced myself that it's in my imagination as the MWs have said no TT (although not convincingly) and everyone who's checked says the latch is good (including a LC). Sorry for going on, but this is now really getting to me
It does sound a lot like tongue tie - the description of your nipples and the shape of your DS's tongue seem to fit exactly.
I don't know first hand of anywhere in your area, but I found this article which said that they had families which travelled to their clinic from Derbyshire.
A list of locations (including the one in the article) can be found here, but it is by no means exhaustive, so maybe someone else will know somewhere closer.
Alternatively, try one of the helpline numbers listed above, or contacting La Leche League. I have heard tell of tongue tie being diagnosed by its symptoms over the phone, but they also may be able to find somewhere local to be seen. Just because one LC hasn't spotted a tongue tie, doesn't mean another might not find it.
I'm sorry to hear you are having such a hard time of it. The only real advice I can think of is to just keep pushing - make a real bloody nuisance of yourself. I know that this is easier said than done when you are struggling on though - but you've done fantastically to get this far.
Hi there - and thank you to LauraRose78 and theborrower for their replies. I have been AWOL as working so hard to try and make some feeding progress (managing to give just an evening formula feed now)... but it is very slow going... and extremely painful... and my baby seems to be slipping a little down the percentiles so I am going to also post over in the general breastfeeding forum about that as theborrower suggests (thank you!).
I guess one of the problems with TT is that fixing that is only the beginning of a lot of these feeding journeys - I thought that my problems would be solved by having it snipped but we have had more problems thrown up (and I guess they all interact and then supply becomes an issue etc.)
Am off to call some more helplines too!
I wished I have known what I've known nor read this message broad... here's my sad story...
My DS was born with posterior tongue tie and like so many stories posted here, the pediatrician, various MWs, HVs, BFC,GP has failed to diagnosed it and the worst thing was the MN we hired for four weeks not only failed to spot it, she insisted on putting DS on feeding routine and would not allow me to feed him even when he was crying. I would used to wake up in the morning and she would tell me DS was very "unsettled" from 11pm -1pm and that she called it the "difficult hour" that every baby has. Being a first time parents with no prior childcare experience, my husband and I believed her. She came recommended from an agency (initial M.Y based in London) and she had strong references!!! DS did not catch up to his birth rate until Week 4 and was bone thin and still she would suggest that I had small frame and that my DS was never going to be big. DS was also feeding on my breasts for an hour or more and often would only stop when he falls asleep and would cry non-stop whenever he wasnt asleep. There were times when he would not sleep at all during the day! She also advised me not to pump, even when my breasts were engorged, the whole time she was there, stating that I wont get much anyway.
It wasnt until Week 6, a friend of mine suggested I pump to see how much milk I have and its then that I realised I only had 1 oz of milk to offer when he was requiring 4 oz and that was the day I started FF. Week 7, another friend suggested that I see a lactation consultant and finally the mystery of my son being unsettled was resolved, the lactation consultant took one look underneath DS tongue and declared that he was 60% tongue tied. She then recommended me to see a wonderful tongue tie specialist, Ann Dobson, who came in few days after who was fantastic and I would recommend her to anyone whose DS/DD has TT.
But by then, as I learned from Ann that breast milk is established in the first four weeks and due to the fact that my breast was not stimulated as a result of DSs TT, the milk has dried up. And despite following her advice in take high dosage of fenugreek and even Domperidone (drug whose side effects is lactation) and pumped eight times a day, the milk never came back.
Even now, no matter how hard I tried to put the incident behind me, I am left with anger and sorrow. There are many times I would find myself in tears, cursing myself not following my instinct to feed and not standing up to the maternity nurse. I have subsequently reported her to the agency and requested a refund but they refused and suggested that I should have complained at the time and that they would have done something about it. If I only knew at the time I would! As to MN, I also emailed her and though she admitted to her failure to spot the TT, she reckoned I was a little harsh! She never been a mother and obviously has no idea what it is like to have DS malnourished and screamed for 6 weeks. Nor does she realise how devastating it is for me not being able to give my son my breast milk and have to put him on FF despite my wish.
As to the hospital, I called them to lodge a complaint and the MW that answered the phone first said it takes 2 to 3 days before TT can be diagnosed, to which I answered a friend of mine had her baby TT diagnosed at birth. And then she goes on to say 30% of babies that were born in that hospital are TT and their pediatricians simply dont have time to check them all, to which I reputed and said say it took my lactation consultant one minute! I am waiting for their pediatrician consultant to contact me to formalise the complaint. I just wished that hospitals and pediatricians would include TT as a routine check, especially when they are the ones who preach on the benefits of BF!
Just love how old is your baby now x
Justlove - Sorry to hear about your experiences. Please try not to beat yourself up, you did the best you could with the resources and support available to you at the time and that's all we can ever do. Hindsight is a wonderful thing - there's things I regret and wish I'd done differently after the births of both of mine.
Maternity nannies ought to have up to date awareness of breastfeeding and issues like TT just like any other professional involved in newborn babies' care.
I think in some hospitals like Bristol, they DO check for TT and snip very early on. There just isn't the consistency across the UK.
Hope you can move forwards from this and enjoy your lovely little boy.
I bf DD to 6 months (was unusual in that I was only 16yo when I had her, 13 yrs ago). I bf DS1 to 6 months. However, DS2, I only bf for 4 weeks, then mix fed for another 8 weeks, gave up totally when he was 12 weeks old. Was just soooo much harder bf him, he was literally on me 24/7. He was late talking, and it wasn't until he was 3.6yo, and undergoing SALT that his TT was dxd. It didn't get snipped by that point though, I made the decision not to.
Fast forward 7 years, and I have DS3. Try bf again, knowing last time wasn't my fault. Felt really difficult again, like with DS2, and I KNEW he had a TT too. MW said as my nipples weren't cracked or bleeding, that it couldn't be a TT. Asked for a second opinion from another mw, who looked and said he had a TT. Sent me to the local consultant when DS3 was 6 wks old, but he couldn't snip it, as DS3's was posterior, and he only does anterior TT's. Got referred to a consultant in London, he snipped it when DS3 was 10 weeks old, and BF has gone from strength to strength. DS3 is now 6months old...and for the first time, I'm not giving up at 6 months!
My son's tongue tie was snipped at 11 weeks. For the first week after, the nipple pain actually got worse. I think it was because his mouth felt weird for him - his latch deteriorated. It was a relief when we got back to the level we'd been at before the snip, and I resigned myself to it not having helped.
But then it very gradually started to get better, and now 3 weeks after it was done feeding is improved. It's not perfect, but the horrible chomping sensation and bruising pain is gone. I had a brilliant moment yesterday when I got up from the sofa with him still attached, walked into the kitchen to get my coffee, and sat back down again with him feeding happily- something I'd never have been able to do 2 weeks ago when the slightest change of position was uncomfortable.
There does seem to be some difference of opinion amongst the experts about the importance of tongue tie. I'm in Oxford, and have had a lot of help from the absolutely brilliant breastfeeding clinic at the John Radcliffe hospital. The advisors there are fantastic and gave me a lot of help with latching, but it's clear that they are reluctant to diagnose tongue tie. When I spoke to them about it, they said they feel it's a bit of a buzz-word at the moment, and that any problems with breastfeeding are automatically put down to a physical problem with the baby, rather than giving a mother help and support, and that tongue tie divisions often don't make any difference to feeding. But once I'd had it diagnosed (privately by a lactation consultant) they did say it was worth getting it done, because it's such a simple procedure, even if it doesn't help you've not really lost anything. I'm very glad I did - it seems to have helped us.
mooshy1970 - my son is going to be 4 months old this Sunday. yay!
Wholelottalove - Thanks for the kind and supportive words, they mean a lot to me. I spoke to my neighbour today and she said to me that there are a lot of hard lessons to learn being a mother, she went through a few herself, again due to poor inconsistent advice from doctors and professionals alike. Somehow, it made me feel better.
I know this is a really old thread but I'm wondering if my five month old has tt. We've had problems with breastfeeding since the beginning. Scores of HCPs have told us it is most likely to be positioning, many without seeing me breastfeed. I've been beating myself up about not holding my ds properly for five months.
It is only recently that I've started to question this. I actually think we are ok at positioning, having put über amounts of work into that and latching on since the first week. I've still got really sore nipples that are compressed to a wedge shape after feeds. We've really struggled with wind, hiccups and reflux type symptoms. These have always been dismissed by all the HCPS I've asked for help as 'he'll grow out of it'. But he hasn't. We've recently tried infant gaviscon but it hasn't made any difference.
Anyway, I don't mean to whine. I really just was wondering if five months is too late to fix ds's tt, if that is what it is? And if we do get it fixed then is it too late to help him breastfeed better? And finally any ideas on who might be able to help with this in Devon. Although we could travel further afield if I thought it might help.
There's a Facebook support group here. Loads of knowledgeable people there. You can post photos and explanation of symptoms and they'll make suggestions. Milk Matters lactation consultants have a virtual tongue tie helpline - costs £26 and they'll give you advice about whether it sounds likely and how to get the best local help.
IIRC the NICE guidelines say that for babies more than 'a few months old' a general anaesthetic should be used. However, there are 2 private dentists in the UK who do laser revisions which don't require a GA. One is in north London - the other probably way too far in Huddersfield. I think there are providers who do revisions up to 10-12 months without a GA (depending on the individual circumstances).
Wanted to revive this thread as I see a few tongue tie threads on the go at the moment and there is some useful info on it.
My 8wo DD is getting her posterior tt snipped tomorrow - really it's a last ditch attempt to improve things and I'm already prepared to switch to ff if not
Some info on tongue-tie and also scissors v. laser corrections:
Tongue-tie in adults:
I hope that helps!
Hi ladies, just wanted to resurect this thread if possible, as i've found it really useful to read through (will have a look to see if anymore up to date ones i've missed).
My question is to those who've had their baby snipped, is it always a really obvious tie when you look for it? Been to a lactation consultant this morning and she thinks baby has one, but when me and DH (who is a GP) look at home, we just cannot see anything. She has a lot of the symptoms though...
I have been referred but haven't heard anything yet. The problem is getting worse as she wants to feed constantly and her latch is not as good as it used to be. Her tt is really obvious but she was ok with it for the first 2 weeks. She is almost 5 weeks now.
If you have a look at some of the links I posted above you'll find an article by Dr Ghageri on anterior and posterior ties. Posterior (or more accurately; submucosal) can be invisible. Most ties have an element of posterior/submucosal tie which is why many dentists/doctors recommend laser over scissors as snipping with scissors is unlikely to divide the restricted tissue enough. Hope that helps
This shows how to accurately examine for a tie (hint: poking the tongue out is irrelevant!).
Ooh thank you so much leggings going to read through now
Great idea OP. This is a huge issue! There is a course to train midwives to diagnose and carry out TT division in Southampton. NHS could save a fortune in speech and language if they had a couple of people trained. Agree with PPs with difficulty getting it taken seriously if baby is gaining weight.
OP can you please share deep latch link. The one posted didn't work.
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