Sign in here if you were told your baby wasn't tongue tied, only to find out later that he/she actually was.

(192 Posts)
mawbroon Tue 11-Sep-12 11:52:50

Me for one. Except he was 6 by this time.

And I was told it by the paed surgeon who used to run the tongue tie clinic.

FFS angry

Yep. I told the MW that DS was tongue-tied, she had a look and disagreed. I was convinced (I'm a BF peer supporter and have seen quite a few TT babies) so we paid for a private lactation consultant to come and examine him.

She said that he had an 80% tie and cut it. It was horrible to have done but oh the relief when he fed - it felt so much better within a couple of feeds.

He also has an upper lip tie but apparently it's very unusual to have anything done about that. Hopefully if won't cause too many problems.

melonribena Tue 11-Sep-12 13:46:43

Me! Health visitor, two gps, countless midwives, breast feeding counsellors and one antenatal teacher! Just been snipped at 6 wks

YorkshireRose12 Tue 11-Sep-12 15:17:03

Sounds familiar! I had a MW tell me he was, two infant feeding advisors agreed but said it wasn't severe enough to warrant cutting and my red raw nipple was down to positioning and attachment issues and a health visitor say there was no tie. Finally yesterday a BF counsellor diagnosed a very tight posterior tie - at nearly 5 weeks - and cut it there and then. Hoping for some relief for my poor nipples now!

madscimum Tue 11-Sep-12 15:20:16

Me too! Had a PTT clipped at 7 weeks, after all sorts said no TT and several people had no idea what I was talking about when I said "posterior tongue-tie". We drove 300 miles and overnight stay to get it diagnosed and clipped privately.

rose: hope things improve! Did the counseller tell you about stretches? These are really important for posterior ties, as the tongue lies there naturally and will reheal if given the chance.

kipplin Wed 12-Sep-12 09:32:32

My baby boy's TT was also missed by numerous MW and drs. I had a terrible time trying to bf him -cracked nipples, mastitis, antibiotics/recurrent thrush. I hated bf and gave up after a few weeks. I am now so sad about this decision. When my son turned 2months he started doing wide open mouth smiles and I noticed the TT. We have been referred to have it clipped but as the TT is not affecting his feeding we are non urgent! He is now 4 1/2 months and I am worried that the proceedure will be more painful. It is done without any anaesthetic here sad. As far as I am concerned it has affected his feeding as we failed to establish bf. ff was also a real struggle to begin with. He has only thrived as I have spent hours giving him small regular feeds. I'm really sad about it all.

ThisIsYourSong Wed 12-Sep-12 09:39:14

Yup, I was told it by an IBCLC angry

whenwill Wed 12-Sep-12 12:38:38

me too (very tight posterior). We found out at 7 months after horrid and miserable time bf, basically taking over my whole life for first few months just to ensure i wouldnt give up. dd had reflux, bad sleep, thrush and wouldn't comfort feed or even proper feed at times. I was going round saying 'no, not tongue tie' - to bf groups who suggested it- 'she's been checked for that'.

paed. in hospital (cos dd wouldn't suckle but chew) said no tt; gp did admitted she wasn't qualified to tell if tt for certain but said no point to refer me as too late to do anything on nhs after 3 months.

I'd love to know stats on how much tt there is out there, what types and does it affect feeding for 6 months. Who is in charge of making bf a priority on the nhs anyway?

There seem to be anecdotal lip tie bf issues but don't know of any proper studies on just this.

thing1andthing2 Wed 12-Sep-12 18:36:27

Not much of a problem here, but at birth, midwife checked him and said "well, he definitely doesn't have a tongue tie" out of the blue. Then at a midwife visit at 3 days old to check jaundice, a different mw said "oh, and he's got a tongue tie". It was snipped at 3 weeks.

jaggythistle Wed 12-Sep-12 19:11:44

i was told in hospital by the pediatrician doing DS1's newborn checks that he had a wee tiny one but it was fine. i was completely clueless and didn't question it.

cue a screaming baby for almost a week as he couldn't stay on and feed effectively. lucky for me a MW saw we were having problems, spotted the tongue tie, said FFS angry and phoned the hospital dental clinic on the spot and demanded an appointment. he had it snipped on day 8 and started piling on weight happily.

i already had one cracked nipple even by then so i feel lucky it was spotted!

Both dc had it.

Ds - missed in hospital repeatedly. Cut by feeding team person twice but didn't help with excruciating painful BF. realised at 1yo it hadn't worked at all (after reading something on MN). He cut it himself while running with a duplo brick at 15mo. shock

Dd - I asked her to be checked in hospital and every time I was told she was fine. But I had identical pain with BF. I asked 11 different people and all of them got it wrong!!! she had it cut and then it re grew. Repeatedly. In the end we had it cut 5 times! The last time was privately done in Southampton. Despite doing all stretches etc it still grew back.
Dd cut hers herself last month. Not sure how but may have been due to the multiple chickenpox spots she had in her mouth.

Now both dc can stick their tongues out as normal. BUT ds has a speech issue which I'm sure is related to the length f time he had his TT.

It is a PITA telling people you know there is a TT and they fob you off! perhaps they'd pay more attention if it was their nipples getting shredded! hmm

whenwill Wed 12-Sep-12 19:34:16

how long before u know if grown back?

mawbroon Wed 12-Sep-12 19:38:25

They don't "grow back" as such, but can reattach if not massaged and stretched.

It seems to take varying amounts of time for them to heal, but stretches etc need to be done until the whole thing is healed. If there are little fibres reattaching, it is neccessary to force it open.

DS1 is getting his done properly tomorrow (the first revision only took the anterior tie and left him with the posterior one still) and I am not looking forward to the stretches one little bit.

sad to see so many people with stories of missed tt, but not altogether surprised.

Anyone else?

Machadaynu Wed 12-Sep-12 19:48:57

Same as many - all sorts of problems latching - weight dropped after birth and stayed static for 5 weeks. Kid was feeding then sleeping from exhaustion, then waking up hungry. Not fun times.

Got all sorts of 'advice' but eventually got the doctor to refer her to get her tongue tie snipped. We got the letter telling us about the appointment (35 miles away) about 3 hours before the actual appointment.

BettyandDon Wed 12-Sep-12 19:52:48

My DD never latched. Never found out why so it could have been TT although numerous people said she was not. Recently my MW has said it was probably TT or flat nipples that caused the non latch. Who knows?

3duracellbunnies Wed 12-Sep-12 20:10:27

The first thing I said when Ds was born was that he had a tongue tie, MW looked and said no. Stupidly I believed her, 9 months later when bf was still sore I saw an NCT bf counsellor who said it was tt. Ds had never stuck his tongue out beyond his lips, and although I was bf it was never as comfortable as it had been with the girls. Nearly 3 now, still uncorrected, no longer bf! Waiting for S+L assessment. He chatters endlessly but often dh and others can't understand him, and sometimes I can't either. He also drools quite a bit too. I do wonder if it has had an impact. He can now stick it out after lots of practise with his sisters, and he can lick ice lollies, it probably sticks out about 0.5cm, but still doesn't form a point.

Seriouslysleepdeprived Wed 12-Sep-12 22:05:21

I knew DS had a TT as it was a full 100% one so really obvious. However five midwives, one HV & two BFing councillors all said it was fine & didn't need cutting.

After mastitis, thrush, ridiculous frequent feeding, loads of latch problems I finally went private and had it cut. They were shocked I had managed to feed for SIX weeks. Poor little guy could barely open his mouth or move his tongue.

They had refused to refer me on the nhs as he was gaining weight and 'feeding well' despite 'nipple sucking'. Makes me v angry that I went through all that and that other would probably given up unnecessarily.

GiantTess Wed 12-Sep-12 23:06:46

DD's posterior tt was missed by about 5 different midwives, 2 health visitors, the infant feeding coordinator and even an IBCLC. Finally went private and had it snipped at 16 weeks. Weight gain has steadily improved since then.

becsparkel Thu 13-Sep-12 14:37:07

Yes, MV & GP said there was nothing wrong with his tongue. I was told to top up with formula due to slow weight gain, stupid people.

All sorted now thankfully... Tho DS also has lip tie and they aren't really treated in the Uk.

MumOfTheMoos Thu 13-Sep-12 17:51:56

I asked the mw in the hospital on day 6 if he had TT as he was just not latching on - trying a lot but unable to do it - she said no. Finally after a home visit from a bf counsellor we got him snipped at 4.5 weeks. He was completely on bottle with a mixture of bm and formula up until then. I used to cry as a bottle fed him I was so distraught tat he couldn't feed directly.

When he had the snip he breastfeeding without a niplple shield straight away for the first time ever.

It's been plain sailing for us ever since.

He's also got lip tie but we haven't done anything about that.

We're now coming up to the 6month mark and he has been ebf since about week 5.

mawbroon Fri 14-Sep-12 07:53:42

Becsparkle, and anyone else with lip tie, there is a clinic in Huddersfield which lasers lip ties.

We were there yesterday to get ds1's tongue done again and also to get his lip tie done.

GOLDFaverolles Fri 14-Sep-12 08:04:28

I noticed ds3's very obvious TT shortly after he was born. The mw said he just had a short tongue like Jamie Oliver hmm, the paediatrician said it was nothing.
GP said it was nothing, and said if I was struggling to feed him I should give him a bottle, because that's what they were made for (umm, and boobs are just a useless decorative feature?)
We eventually saw a paediatrician at a hospital miles away when ds was 10 weeks old, who took one look and was baffled how so many health professionals could have missed it.
Even though he had it snipped, he still has a very obvious TT, and may have to have it snipped again at some point if he has speech difficulties.

whenwill Fri 14-Sep-12 10:07:08

just wondered who or whose dp on this thread has/had tongue tie themselves and/or were you breastfed? how genetic is this thing? i was bf and no known tie.

BertieBotts Fri 14-Sep-12 10:09:55

Happened to my friend, she saw 6 people who said her DS wasn't tongue tied, eventually saw a LC who ran her own group in the next county who diagnosed it immediately, our area is pretty crap for cutting them, so she had to travel 100 miles and pay to see a specialist who cut it for her. Lip tie as well which again, only this specialist picked up on. Took them ages to fight to get that one cut, but she found it helped when they eventually did.

ThisIsYourSong Fri 14-Sep-12 10:17:34

[b]whenwill[b] no TT on DH's side known, he was breastfeeding until over 4. Lots of lip ties on my mum's side including me, I wasn't breastfed.

TT's appear to be on the increase bug they're not sure why, possibly increased maternal age. Google mid line defects if you are interested smile

madscimum Fri 14-Sep-12 11:59:04

I have tongue- and lip-tie. My mother tried to breastfeed me and stopped after three weeks because it hurt so much. While I was struggling through things with DD she kept saying that with such a sad tone sad I reassured her she had had no chance -- with my TT and the complete lack of knowledge back then she had done the best she could.

My father had a cleft lip and a cousin on my mother's side had a cleft palate, so there definitely is a genetic history of midline defects in my family.

EmpressOfTheGoldOceans Fri 14-Sep-12 12:22:34

I had one & was diagnosed at 11 by an elocution teacher. DM had been unable to breastfeed me & I had a load of speech therapy in early years at primary school, the elocution teacher was meant to be a last-ditch attempt to sort my speech out before starting secondary.
I had it snipped under GA & then went to the elocution teacher for lessons in how to talk properly.
Actually, the whole thing was practically worth it just for that bit - loved her, the talking lessons developed into acting lessons & were huge fun. But it would have been nice to have been diagnosed earlier. hmm

HappyAsEyeAm Fri 14-Sep-12 12:26:16

Yep. When Ds2 was born, the dr said he didn't have tongue tie and he was dischartged. The community midwife 5 days later said that he did, and that she would refer him to have it snipped at the local hospital.

Cue lots of feeding problems, me having a horrible time of BFing as he couldn't latch, and me stopping BFing by the time the appointment for the snip came through (6 weeks later).

Considering I had a horribel time BFing DS1 and stooped after 5 weeks or so, and then cried every day about 'not giving my baby the best' for months, I was very lucky not to have had serious PND or similar when I couldn't feed Ds2.

me! I asked about it in the hospital (both DH and I had TT as children) when I was finding breastfeeding painful. I was told "it's early days yet, you'll get the hang of it" and "as he can move his tongue forward, I think not" (He couldn't stick it out below his lower lip, but could push it forward a bit).

Lactation Consultant diagnosed him with a slight posterior TT - got him snipped at 6 or 7 days, and after a couple more days for my poor scabby nipples to heal, we've never looked back. DS2 is due at Christmas and if establishing BF isn't going smoothly in the hospital I won't be leaving without a gazillion opinions on the likelihood of TT!

artifarti Fri 14-Sep-12 12:56:42

Yes. DS1 was impossible to feed, dribbled it everywhere, I was red raw, he couldn't poke his tongue out. MWs said no to TT, HVs said no to TT, GP said no to TT. I eventually got a diagnosis at 10 weeks old from a very experienced BFing counsellor at the hospital after watching him feed for about a minute. He got it snipped at 14 weeks and things improved within a week.

mawbroon Fri 14-Sep-12 13:37:47

Hey! We made discussion of the day! A first for me grin

DD1 had a 'mild' TT. made BF very painful for me - for two months. All the MW's, HV's & DR's said she was feeding fine, latch was fine and it "wasn't hurting really" angry. I asked everyone I saw as it really hurt. No one even looked at her mouth. I had no idea what TT was (my pre MN days).

Finally, when she was 2.5 mo, a very experienced MW (who is also a friend & lives in another country) diagnosed DD with mild TT. Not long after this things sorted themselves out so snip wasn't necessary and feeding improved greatly. I think she just grew enough and matured enough to overcome it.

But I had 2.5 months of BF hell & endless people telling me I was wrong, she was feeding fine and it didn't actually hurt.

When DD2 was born I insisted everyone who actually saw us (MW's, Paed's etc) checked her for TT - thankfully she was fine.

whenwill Fri 14-Sep-12 14:21:23

Right, looked at midline issues and seems tongue tie can be linked to all sorts of other midline issues. DD has sacral dimple (line and two dimples not hole) and a long take folic acid til week 6.

Totobear Fri 14-Sep-12 14:39:07

Yup! Got it done privately but sadly didn't help our feeding issues, he just couldn't understand that my nipple was not a bottle teat. It was posterior TT and v deep so they weren't able to get rid of it entirely without op which I wouldn't have out him through just so I could breast feed.

Interestingly I was same as a baby.

Totobear Fri 14-Sep-12 14:41:13

Oh and the heartache and pain it caused on my part was immense!

Napdamnyou Fri 14-Sep-12 14:46:26

Diagnosed it myself at 6 months thanks to MN links and took him straight to private ENT specialist who snipped it with a local. Was told by midwives that he didn't have one, just a tight frenulum. Months of exhausted crying baby feeding so slowly round the clock, exhausted me, made his first half year almost unendurable.

Still BF now and he's 21 months!

thatsthebadger Fri 14-Sep-12 14:52:12

Me too. DD was TT so when we had DS 8 weeks ago I had it written in capitals on my birth plan that I wanted him checked for TT in the labour ward. He was. Twice. Once by a specialist midwife. We were told he had a minor posterior tie that would sort itself out during bfing.

5 weeks later I'd run the gamut of mastitis (multiple times) and thrush. Finally I noticed that he had a heart shaped tongue and wasn't sticking his tongue out. Asked a friendly mw to refer me on my say so (she never examined him herself). Eventually saw a surgeon last week who confirmed a significant anterior tie. He's due to be snipped on Monday. For the past two and a half weeks I've been exclusively expressing. Horrible time consuming process but I really want to get back to bfing if possible. Who knows if that will work as DS may well have lost the knack.

Livid that no HCP spotted it and even more angry it's taken over three weeks to get the snip. Breast is best NHS? But make it almost impossible to sort out a (minor) problem in good time? Brilliant! Thanks.

TheLaineyWayIsEssex Fri 14-Sep-12 15:06:51

whenwill do you have a link about other midline issues? My ds had PTT and am pretty sure he has a lip tie (big gap between front teeth and can see where it is attached) curious as to what other things could be related

Namethattune Fri 14-Sep-12 15:08:15

I was in hospital for a week after DD was born, and was having significant problems with bf, but not one person checked for/mentioned tt. I actually went to a bf clinic in desperation at 3 weeks, as I was in agony, and an NHS bf councillor looked in her mouth and said everything was fine. It wasn't until a private lactation consultant looked at her at 5 weeks that a posterior tt was diagnosed.

Tempernillo Fri 14-Sep-12 15:08:44

Me!

Tempernillo Fri 14-Sep-12 15:14:22

In my case she had a very obvious anterior one. Noone noticed it until I went to hv with feeding probs at about 6 weeks. Then I was told it won't be a problem by my gp. Eventually saw bfing nurse who agreed she wasn't latching properly and corrected it for me.

mawbroon Fri 14-Sep-12 15:39:42

Napdamnyou, unbelievable your midwife saying no tongue tie, just a tight frenulum.

Yes, tight frenulum.... otherwise known as.....tongue tie!

onlyaname Fri 14-Sep-12 15:42:00

My DD had TT.

A student midwife in hospital first noticed it. Paediatrician came along, stuck his finger in her mouth and when she sucked said it wouldn't be a problem. ( first paed who came to do checks didn't notice it).

Turned out it was quite a bad tie and I really struggled with BF; very painful, DD lost weight. I checked out Internet and was sure BF isses due to TT. Luckily anther midwife agreed with me and referred me to midwife within the trust who cut TT's. Day 11 went to see her and got it cut, breast feeding improved within about 3 days (carried on to 20 months!).

Midwife who cut it was great. Gave me lots of info. A couple of things I remember - they think it is passed on from the father and a study/ survey of newborns was done in Southampton area (might still be happening) that showed a very high incidence of tongue ties. From what I remember it was a massive study.

I was so close to stopping BF, really glad that it was first brought to our attention by the student midwife and that a midwife who believed me came to visit.

Tempernillo Fri 14-Sep-12 15:45:03

My gp did the sucking on finger thing only! Only thing that checks for is cleft palate. My bf nurse said that it diesn't matter how strong their suck is, if they have a bad enough tongue tie, they can't get nipple far enough in to the back of their mouth to suck properly. My dd sucked VERY HARD right on the end of my nipples. Ouch!

Tempernillo Fri 14-Sep-12 15:45:28

I meant to say to latch properly.

onlyaname Fri 14-Sep-12 15:49:03

www.ncbi.nlm.nih.gov/pubmed/15953322

Re the Southampton Study... Not an ongoing study by the looks of things.

More info on this online. Also search for Mr Mervyn Griffiths from Southampton Hospital.

onlyaname Fri 14-Sep-12 15:51:23

Tempernillo - my DD could suck hard too! Bloody painful it was. Just shows the lack of knowledge about tongue ties. Sucking does not equal a good latch.

Poppet45 Fri 14-Sep-12 16:04:40

Two more here. DS still has his posterior tongue tie, aged 3, as it was only discovered this year and it has affected his speech to some degree. Mind the HVs and GPs missed his refluz and dairy intolerance too so their incompetance in this wasn't particularly startling. DD was in hospital for 9 weeks after being born 3 months early and came home BFing, but countless neonatologists managed to miss hers despite my nipple being chewed into quite an unusual shape, and her having the most appalling refluz she'd go limp and blue around the lips during feeds as she choked so often, and then they were wringing their hands about whether to do anything about it. My current HV who is brilliant, got me an appointment that day. The hospital's belated referral arrived about three months later. She also has a top lip tie. I think both ties are supposed to be there as scaffolding while babe's mouth is developing then both are supposed to disappear during the final stages of pregnancy - hence lots of prems have them quite badly.

walrusmoustache Fri 14-Sep-12 17:29:59

My DS had one, all HV and MW who looked said he didn't, pain when feeding was down to poor latch, then excrutiating pain in boob was thrush (it wasn't). Feeding literally all the time, falling asleep constantly when feeding cos it was such hard work to get the milk, couldn't stick his tongue out, milk dribbling out of his mouth when feeding.
I kicked up a fuss, demanded to see a specialist and saw LC who diagnosed his tongue tie within about 30 seconds, cut it there and then at 5wo.
Apparently it can run in families? I had one too.

whenwill Fri 14-Sep-12 17:38:29

laineyway no one link Im affraid. A site forum called 'mothering' came up a lot on all these issues. oh hang on (sorry one day i'll learn links):
http://www.pediatricsconsultant360.com/content/what%E2%80%99s-your-diagnosis-2?page=0,1
and http://www.mayoclinic.com/health/medical/IM01047

... that picture is like dds sacral dimple but google has way worse ones that come up in images.

Head thing is called corticostenosis and is when some of the head plates join. i don't have diagnosis of this btw but her head looks a lot like the google images for the sagittal version.

(my previous post also meant to say i didn't take folic acid until week 6).

Jaypeg Fri 14-Sep-12 17:45:39

My DD has a posterior one which they said was borderline. Turns out my partner has the same tie and I myself have the worst kind! It probably accounts for why i was bottlefed and why I have a lisp.

BF for me went badly from the very beginning. DD would only latch onto the nipple and by day 4 when I got a private BF councillor round to assess the tonguetie we were all in a state. In the end I gave up BF which really saddens me but there were just too many tears and problems. So TT is still intact until it presents a problem. My experience of the NHS is that they weren't that bothered. They didn't even raise it as a potential issue as to why I was having so many problems. It was a doula who spotted it and gave me the details of the midwife who would come round and do the op. If anyone is north london based and would like it let me know. She was really great.

DD1 had tongue-tie but was never officially told. DD4 has tongue-tie and had upper lip tie until she fell and bust it. It was the dentist who told us about DD4 aged about 2 and still breastfed.

Napdamnyou Fri 14-Sep-12 18:29:31

mawbroon I know, tight frenulum = Tongue tie,what a twerp! Kicking myself I didn't kick off but was exhausted new mum and didn't know any better. sad

mawbroon Fri 14-Sep-12 19:11:56

I understand Napdamnyou! I hate arguing with doctors and hcps, but sometimes they are plain WRONG!

SarryB Fri 14-Sep-12 19:25:08

I'm pretty sure LO has lip tie - but neither tongue or lip tie was ever mentioned to me by HV, MW or GP for the possible reason why we found BF so hard in the first few weeks.

DS had a TT which 3 paediatricians failed to spot hmm and when I noticed it when he was about 8 hours old, another paed was sent to tell me that they wouldn't do anything about it unless it affected his speech when he was school age angry

We had it done privately when he was 6 weeks old after WEEKS of arguing with the local NHS trust to try and get them to do it. It was money we didn't have but there was nothing else to do.

Interesting about the genetic link - I have a very obvious TT. Can't stick my tongue out, can't blow a raspberry properly, can't do full on snogging. My mum was mix feeding me by 6 weeks as I was never satisfied and not gaining weight.

messtins Fri 14-Sep-12 19:50:21

DS2 had TT - diagnosed the day he was born by the MW, then had several MWs and doctors disagreeing whether he was TT or whether it was affecting BF. I'm a peer supporter and had fed DS1 and I KNEW it was so stamped my foot until I got a referral to the lactaction coordinator who cut it day 3. Met another woman on the ward who had already given up on the BF she had hoped to achieve because they had told her that her son needed "an operation" to release his TT. So much misinformation, so many BF relationships needlessly sabotaged by this. How hard can it be to train MW or doctors to check for this in the day 1 checks??

SarryB Fri 14-Sep-12 19:52:02

TBH, I'd never even heard of tongue/lip tie until I visited Mumsnet.

SuiGeneris Fri 14-Sep-12 20:07:49

In hospital I was told DS1 fed beautifully. Sent home then readmitted via a&e about 18 hours later for weight loss and jaundice. When the infant feeding coordinator saw us she diagnosed posterior tt, but the hospital did nothing about it. Fortunately the coordinator put us in touch with a private lactation consultant who snipped it at home at about 10 days. Despite repeated problems we fed until 23 months...

whenwill Fri 14-Sep-12 20:15:27

me neither sarry b. MN got me checking why I'd had 7 months of feeding problems

mawbroon Fri 14-Sep-12 20:17:51

I first learned about it on MN too. However, I have been on here for 100 years quite a while, so it was a good few years ago now.

Only recently did I realise that most of ds1's health problems are related directly or indirectly to his tt.

whenwill Fri 14-Sep-12 20:19:40

sarrB!

Me - complete (and painful) nightmare sad

whenwill Fri 14-Sep-12 20:21:52

grrr... sorry SarryB !! shock

frazzled09 Fri 14-Sep-12 20:34:25

Similar story. 5 different community midwives in the first 3 weeks didn't diagnose it. Failure to thrive = hospital admission at 3 weeks. Silent and non-silent reflux so lots of medication. At 3 weeks BFN volunteer spotted it (lovely woman!) and independent consultant snipped it at 6 weeks (£100) after the NHS paed told me to just use formula and that he didn't believe in cutting tongue ties. Once it was snipped, my nipples healed and the pain and blanching stopped, and he PUT ON WEIGHT. Nursed until 2yrs 9months.

It reformed at 4 months, we paid to have it snipped again (as the HV refused to believe me about tongue tie and would only suggest formula and early weaning), and we were given better post-snip exercises this time to encourage him to move his tongue around to stop the scar tissue forming the tie again). He rose from 0.4th centile to 75th by 1 year old; which was back where his birth centile was and matched his height, having been a bag of bones for the first few months. No problems since. Except the reflux persisted for 10 looooong sleepless, tearful months - I am awaiting the results of some research on a potential link between tongue tie and reflux with interest.

Now he is 3yrs old and can stick his tongue out to lick an ice cream with no problem smile

I love the BFN volunteer who spotted his tongue tie [flowers]

I have a TT. I have had problems swallowing food all my life. Don't want to get it cut now though as that would mean speech therapy. My grandmother talked of her children (my Mum & uncle) having "short tongues" and so not feeding properly. It must be hereditory.

frazzled09 Fri 14-Sep-12 20:36:59

oops. thanks

Iggly Fri 14-Sep-12 20:38:35

Told that dd's was minor.

Turned out it wasn't - was 80% tied. Found at at 12 weeks after a most depressing three months of shitty feeds. I'm still angry about it now.

I've read a lot about TT since and it's not understood by many because BF rates are so low. Back in te day whenBF was more common, MWs knew their stuff about TT and it got sorted quicker.

Oooh, don't get me started!! angry I didn't even bother asking our local HCPs as I think by 12 weeks they thought I was rolling out every excuse in the book for the lack of weight gain in my DD. Had latch checked more than once, including by the feeding co-ordinator who pronounced all was fine. No-one ever checked in her mouth.

Very sad that the result was a private LC who diagnosed and snipped at 12 weeks by which time we had Failure to Thrive referrals and no option but to wean at 16 weeks!! sad angry, HV's response when I told her was "you must feel very let down."

We are still infrequently bf at 7.5mo smile

Having had the same issues with DD1 and now knowing that it's genetic, it does make me wonder if she also had/has TT.

mawbroon Fri 14-Sep-12 21:15:34

frazzled who is doing the research? Can you post about it on here when it comes out?

DS1 had really bad reflux and bloating which stopped after revision of his tt earlier this year, despite the revision not being done properly.

I would be really interested in seeing the research given that my sample of 1 is not very scientific smile

Kaekae Fri 14-Sep-12 21:48:07

My dp has a tongue tie and both my two DC were born with a TT. My son is five now and has never had it cut as he's is very minor. But I could not breast feed him because it a gone undetected even though I'd asked several Midwives to check. Then two years later I had my DD I asked as soon as she was born about a TT as I was determined to BF. Again I was told everything was fine. Five weeks of trying to BF in agony and not being able to take it anymore I went to my GP, again told she didn't have a TT. I was at breaking point by then, my poor nipples were bleeding and I was so down. Then whilst in the GPs surgery I spotted a notice for a breast feeding clinic, went alone and thank goodness got some help, the lovely lady discovered my DD did infact have a TT, had to wait a few weeks though for an appt to have it cut and sadly I just had to give up BF as I got an infection and my breasts just couldn't take the pain anymore! I was so upset not to have been able to properly BF for the second time but finally I was pain free. My children's speech is fine and they do not have any problems eating etc.

perfectstorm Fri 14-Sep-12 22:53:35

I had a lactation consultant cut it, then come back when he still wasn't feeding, then go very quiet and weird. We found out why when we had to take him to a paed surgeon to get the thing done properly - she'd missed 2/3 of it and hadn't had the guts to fess up when she did her 2nd visit.

She charged us for that 2nd visit, too. angry

I expressed for 8 months, 7 of them exclusively, because by the time I gave up trying to BF, DS was refusing formula. I had crippling PND and failed to bond for a full year in direct consequence. My 2nd child, should I be lucky enough to have one, will be formula fed from day one, and anyone seeking to hector me to the contrary will be told to fuck themselves sideways like the ignorant patronising cunts they are, because gasp a mother with severe PND is not terribly good for a baby, either.

I wish, wish wish I'd just done as my GP advised and moved to formula after the first couple of weeks. We'd all have been so much better off.

perfectstorm Fri 14-Sep-12 22:55:26

Just to clarify: I am not saying peer supporters or lactation consultants are cunts! I mean the kind of judgey interference I did, sadly, encounter when I was wondering about giving up.

Formula is second best. No doubt about it. But there is so much more to being a mother than how you feed.

imogengladhart Fri 14-Sep-12 23:03:44

Message withdrawn at poster's request.

fapl Fri 14-Sep-12 23:10:50

Shit, bloody hell, what you learn on mumsnet!

Talking about midline issues, DS2 has posterior tongue tie and lip tie, and I never knew what a sacral dimple was till 2 minutes ago when I read this thread and he has that too! Me and OH always thought it looked a bit weird when we were wiping his arse during nappy changes.

Another midline issue I learnt about on mumsnet a while ago that boys have is and was termed 'snapping the banjo' if I remember correctly, something to do with a bit of the skin in the foreskin breaking or tearing when being vigorous with their pens for the first time.

Does anyone know of a resource that details all midline issues in one place?

I also did not take folic acid till maybe 8 weeks preg, should I be feeling totally shit that I did something wrong?

I'm finding this fascinating. DS2 has/had a Class IV upper lip tie (self-diagnosed, even my Ind MW failed to spot it) which may account for a slightly rocky start to bf and his consistently rubbish latch. (He thrives, though and is still bf at 21 m.) His was thick and ran between his front teeth, making a diastema, and attached behind the teeth. It blanched when you tugged at it. It was so bloody obvious once you knew what you were looking at! hmm I'm really disappointed that so few HCPs even know to check for it.

He also has what I'm not allowed to call speech delay yet, since he's not yet 2, but anyway, he has no speech, at all. What do I make of this? confused Anything? I'm grabbing at straws somewhat because I'd much rather it was something potentially 'fixable' behind his lack of speech.

He did partially tear his tie when he tumbled off a chair blush but I think it re-grew. From time to time it bleeds slightly when we're brushing his teeth, so it's clearly still too tight. I've mentioned it to the HV and one GP and they were both pretty nonplussed, so I'm not sure whether there's any point taking it back to them.

(as for mid-line defects - an antenatal friend had a baby with v severe tt, she couldn't breastfeed at all, and that baby also had a deep sacral dimple. I had no idea that tt could be related to spina bifida and other mid-line developmental problems.)

fapl Fri 14-Sep-12 23:30:04

Penis, not pens! blush

perfectstorm Sat 15-Sep-12 00:29:47

Oh, and yes, DS also has a sacral dimple. However I've googled and not found a single medical study linking midline developmental issues with folate, specifically excluding neural tube defects. And one study that ruled such a link out.

I was told there's a genetic link, though. And my DH has a terrible tongue-tie, too.

Thumbwitch Sat 15-Sep-12 00:37:00

Me. I asked them to check because DH is tongue-tied and I know there's a chance of it being passed on - the first 2 HCPs who visually checked said no. The BF expert who came to see me because DS was having troubles latching on, ran her finger under his tongue and said "yes, he has a small TT". It was snipped when he was 2wo and despite only being a partial, it made the world of difference to feeding.

Juggling, he also had the tight top lip frenulum - I asked the doc later, when he was a few months old, if it would be a problem and they said it was doubtful - but then when he was 2, his cousin kicked him in the face by accident and tore the frenulum so now it's free anyway.

I've to keep an eye on him though - 2 out of 3 tight frenula might indicate the third one, on his foreskin, may prove a problem as he gets bigger too. DH was circumcised after birth so we have no indication whether or not he would have had a problem himself there.

DS also has a small sacral dimple BUT fapl - I'd been taking Pregnacare (so including folate) for months before falling pg with DS - I don't think it's linked, I think heredity has a lot more to do with it. Hope that makes you feel a bit better smile

lookout Sat 15-Sep-12 09:26:44

ReshapeWhileDamp Get yourself on to the tongue tie support group on facebook. There is a wealth of information in their documents section about undiagnosed and unreleased ties that could really help you. It's very helpful to have all the information in one place! Also try Dr Kotlow's website - he is the world's authority on tongue/lip ties and has written several medical articles about them. Ds2 has a lip tie too and we are currently deciding when/if we are to get it cut. Good luck!

Just to add, ds2 had tt at birth, but after a couple days of excruciating feeding, my NHS breastfeeding clinic picked it up and sent us for revision (they messed it up, but that's another story!).

ophelia275 Sat 15-Sep-12 09:29:49

My ds2 had a severe tongue tie diagnosed after about a week by visiting midwife. The wait for the operation on the NHS was about 8 weeks and because I wanted to breast feed we decided to have it done privately and paid £150 for the privilege by a specialist midwife. All was ok.

whenwill Sat 15-Sep-12 10:10:41

good to hear about folic acid. what study ruled it out perfectstorm? my thought process went: spina bifida is midline issue and sacral dimple can be (not always) linked to sb and folic acid certainly plays a role there. and sacral dimple linked to tt. More studies should be done then?

Maybe a genetic link to how somebody absorbs, processes, uses etc. folic acid? It does seem to be true that those with sb need an extra hgh dose of folic acid during pregnancy, as they have more sb suseptible genes (true for other midline stuff?). Folic acid supplementation does not 100% rule out spinal bifida occurance.

Dd's liptie and dimple seem a bit of a mystery genetically here though maybe tt- not sure.

though is all this more common now than before folic acid supplementation??

MumOfTheMoos Sat 15-Sep-12 10:17:07

That's interesting about maternal age and TT. My mum had (according to my nanny) one of the worst tongue ties that the mw had ever seen. In 1942, the mw dealt with it there and then. My nanny was 40 when she had my mum.

I was also 40 when I had ds - he had a 'medium' TT - apparently!

BertieBotts Sat 15-Sep-12 11:00:02

How bizarre, I have a very very slight sacral dimple, and I think I must have had a slight tongue tie too because I tore my tongue frenulum as a teenager blush during a rather vigorous kiss! I have a gap between my front teeth as well but don't think I have a lip tie.

perfectstorm Sat 15-Sep-12 11:27:52

Whenwill, here's the study. There's also one on oral clefts, that finds the same thing. I've seen something that says 2 of 7 studies think there may be a link to clefts but 5/7 are to the contrary. In a sense it doesn't matter much, because supplementation is essential for neural tube reasons anyway. I mean, non-neural midlines aren't the issue spina bifida is. Maybe the bigger issue is why we don't automatically supplement bread, as I understand is done in the USA (?). Perhaps there is a reason I don't know of.

DS had one of the worst tongue-ties the surgeon (Mervyn Griffiths, who wrote the study the WHO now rely on in advising division - the procedure had fallen out of favour for some years before he began to perform it again, and in fact he was reported to the BMA by a couple of irate colleagues...) had ever seen, even after the failed initial cut. It turned out that the tie had been so severe that his tongue was restricted even after division, and only a few months of eating solids, and thus using the tongue constantly, altered that. For the first months of eating he had to use his hands to remove food he didn't want to eat - his tongue couldn't do it. He also has a double frenulum, so it looks like this: () under his tongue now, post-division. His father has a severe tongue tie too, which was never seen to. And I supplemented with folic acid before and during pregnancy, incidentally. It didn't stop it happening.

Obviously my own situation is just anecdotal and nothing more, but I am concerned to see women in this thread worrying and blaming themselves, when there is no strong evidence that they need to. I was folated to the gills, but it didn't help this. DS has a sacral dimple and a severe tt. So does his father. Don't rule out genetics, because one of the first things I was told was that if a parent has a tonguetie then the odds are about 1 in 4 that a baby will, too.

Some0ne Sat 15-Sep-12 12:18:22

DS was a terrible feeder from the start but it was put down to brain damage. After a couple of weeks I pointed out to the doctors (he was still in the NICU) that he had a tongue tie; they admitted that it might be causing the feeding problems but no-one in that hospital would cut it. He was referred to another hospital but the waiting list was very long, so he was only seen there last week (he's 7 months now). They've said they'll cut it but because he's so old they want to use a general anaesthetic, and because he has heart problems they can't do it till they're fixed, so he'll be at least 11 months when it's done.

perfectstorm Sat 15-Sep-12 12:24:48

Incidentally, if anyone is facing problems with their Trust and division of a TT, Mervyn Griffiths at Southampton will cut it if if a cheque (was £100, which was less than I'd paid the useless lactation consultant!) is given to his Trust. That Trust will seek to bill your own local one, and if they succeed, your cheque is returned to you. But as it's officially a private appointment, there's hardly any waiting list. I was seen 5 days after contacting them. (And my Trust did pay, so I got my uncashed cheque back).

My local Trust only had one guy who could cut it, and he'd been on long term sick leave. The relief of having it done was huge, even if it didn't work.

For the record, Mervyn Griffiths was wonderful. He's dedicated a lot of his professional time to helping women with TT babies feed, but he gently said to me that when he was a baby, it was thought formula was better than breastmilk because babies gained weight faster, so that was all he'd been given. And he was a healthy, academically successful adult regardless. He was so lovely, and again an example of the great people who can and do work in lactation advocacy. He was very supportive of women who think formula is the best option for their families.

whenwill Sat 15-Sep-12 13:45:06

Sorry, i didn't mean to make anyone worry. tt and sacral dimples are so common (it seems!) and are not life threatening or anything. I just thought since there are so many of us in one place it might be worth comparing. I read about the maternal age thing too.

Ann Dobson cut dds in London at 7 months cos local nhs wouldn't do it over 3 months. Ann also trained ?under/around? Mervyn Griffiths. Was not as bad cry as injections, then happy, normal, ate tea etc. calpol/ibuprofen for 2.5 days as was grumpy/uncomfortable sleep. wasn't expecting much at this ages but.

No great expectations cos of age but mouth opened wider in first few days, then night latch improved (head back and nose clear of breast tissue) and now (3 weeks later) i would say about 80% of feeds I cant feel bottom teeth and she stays on at the start (was always on/off before) and seeks out breast and sucks for comfort so much more (bit of a pain actually cos im not used to it!). Breasts also seem softer and rarely feel letdowns since (don't know what that's all about).

mawbroon Sat 15-Sep-12 14:34:05

A few people have mentioned needing GA for older babies. Just to let you know that Dr John Roberts at Cote Royd dental practice in Huddersfield does laser tt division without need for GA.

DS1 is almost 7 and we got his tongue and lip done there the other day.

Genetics at play in our family too. DH has posterior tt (only twigged this when I started looking into it for ds1). DS1 had anterior and posterior tie and also a lip tie. He also has a high palate and associated dental problems and he is starting the first phase of orthodontic work next month. DS2 has lip tie and tt, but he doesn't have the high palate or any of the other problems that ds1 had, so we are just leaving it.

Did you know that allergies/intolerances are also linked to tt? Gut problems are common with tt (reflux for eg) and it is thought that a leaky gut leads to various problems, including allergies.

sad and angry at the trouble that people have had getting tt identified. And I bet there is much more of it around than we currently realise.

Thumbwitch Sat 15-Sep-12 14:48:26

mawbroon - do any of your TTd males have foreskin issues? Would help me to know if they do, please.

perfectstorm Sat 15-Sep-12 14:58:40

Mawbroon, you don't happen to know if that can be done on adults, do you? DH has never had a division because the risks of GA outweigh benefits, but it might be worth it IMO if local is all that's required for laser.

perfectstorm Sat 15-Sep-12 15:00:20

And DH has had shocking orthodontal problems plus a rhinoplasty (which failed) to sort out breathing/rhinitis. I'm planning on getting DS' teeth looked at by an orthodontist when he's 5 or so as the earlier they can get an idea of what treatment (if any) is needed, the better.

ClimbingPenguin Sat 15-Sep-12 15:06:09

DS is TT and LT but as he is nearly a year old with only minor feeding issues I'm not sure whether to do anything or not. Am on the fb group but still as confused as ever. Waiting for the London clinic to start and then I could have a consultation as it's the dental stuff I'm mostly worried about atm. Also I just want someone to confirm he has TT/LT but everyone seems reluctant to.

mawbroon Sat 15-Sep-12 18:28:54

Thumbwitch dh is fine, ds1's hasn't retracted yet, he is almost 7 so I don't know if it should have done by now. DS2 is 2.5yo so I haven't looked at his yet. Sorry, probably not very helpful! I do wonder about ds1 though because his sort of balloons a bit when he pees.

perfectstorm yes as far as I know, he will do adults as well.

MoJangled Sat 15-Sep-12 18:45:08

Really interesting thread.

Like many on here, DS had undiagnosed tongue tie which, despite me asking 7 different MW/HV/docs for help in first 2 days wasn't picked up, even when we were admitted day 3 via A&E, baby almost in coma for tube feeding. Took another 3 weeks of horrendous struggle and mastitis before snipped, then exactly 12 hours to reach completely new, lovey, BF phase and healthy baby.

DH has one too - unclear speech and can't snog, so laser info above is very useful. (Although he's sensitive about hs speech and I've never mentioned the snogging so I'm not sure whether to raise it!)

The question is WHAT SHOULD WE DO???? A similar thread last year was referred to Mumsnet HQ as a potential campaign - I really feel that this should be dealt with better and would put time into pushing for it, if anyone want to join me? I dont know how campaigns work on MN though...

Namethattune Sat 15-Sep-12 20:21:01

I'd be up for a campaign. The NHS seem woefully ignorant on tt, especially considering the feeding problems it causes. If they want to push the breast is best message then they need to understand anything that can interfere with bf!

Food for thought on this thread. We were referred for tongue-tie division when DS was 4 days old. It's been two weeks and we've not heard anything. We think he might have partially divided it himself but I really want to see the consultant to get it properly seen to. Really frustrated as although I think DS is doing okay with feeding, I know he could be doing better. And it would be great not to have to do the exaggerated latch all the time ... ! Not had him weighed for a week and a half either as health visitor turned up early to our home visit and I was still out doing the nursery run, so really hoping that he's getting enough to gain weight. I know for sure that if I wasn't a veteran breastfeeder, I'd probably have moved to expressing bottles by now. Beyond cross with the HCPs I've seen at the moment angry

mrscobweb Sat 15-Sep-12 20:31:00

ds spent first 3 days not feeding properly because he was TT an there was much debate amongst mw and mca's (completely useless!) as to whether he was or not. By the time his appointments with the hospital had been lost twice he was 4 weeks old before it was cut. He never took to bf and I didn't have the patience to persevere. A fun 6 months of expressing!!#
Don't think there's any genetic pre-disposition - just one of those things that no-one warns you to look out for if it's your first

Naylor71 Sat 15-Sep-12 20:54:13

This has been an interesting thread, my baby is 4 weeks old and only briefly last week a mw mentioned she might have a tt so I went to see a private lactation consultant to be told, yes it was a quite severe one and with nhs waiting list at 8 weeks, we paid to go private and have it lazered however when we got there, her mouth was too small for the lazer so we had it cut. She is still feeding quite continuously in the evenings but is definitely putting on weight now and sleeping better. It is upsetting that after all the mw and hv we saw no one diagnosed it earlier and I was told to eat a high fat diet and not to rush about (I wasn't).

MoJangled Sat 15-Sep-12 20:58:02

OK, I have started a thread on the Campaigns page for a TT compaign here . Come on over and add support, this really really shouldn't be impossible to fix...

BoffinMum Sat 15-Sep-12 21:30:02

I learned I had a tongue tie at the age of 41 from a bf counsellor. No wonder mum struggled with feeding me.

BoffinMum Sat 15-Sep-12 21:31:07

Although she had stopped well before I was 41, obv. Bitty and all that. grin

colafrosties Sat 15-Sep-12 21:34:07

DS had tongue tie - on day 3 in hospital (after C-section) I asked paediatrician if DS had tongue-tie, as (a) it looked very much like it, and (b) I was having a lot of trouble b-feeding once more milk came through. He said loftily, oh it's too young to tell at this stage. Then day 5, once I was home, visiting midwife took one look in his mouth and said oh he's got tongue tie. Managed to get it snipped on day 10 (NHS hospital) - DS had milk beforehand and almost slept through the whole thing luckily! Will now go to campaign thread .....

MoJangled Sat 15-Sep-12 21:40:00

Campaign thread here for anyone who wants to see a better approach to TT!

(reposting for ease of clickage from prev page)

chairmanofthebored Sat 15-Sep-12 21:53:36

After 3 weeks of breastfeeding hell with my second child, a 2 separate lactation consultants diagnosed posterior tongue tie. I attended my local tongue tie clinic and was sent away by the paed saying nothing was wrong. I felt patronised and was essentially advised by the (male) consultant to just man up and feed even though i was in agony! and didn't know where to turn. I persisted and went back to the lactation consultant who then referred us on to a london hospital where they specialise in tongue tie. My son had it snipped at 6 weeks old. Bf instantly improved and i am still feeding at over a year, no thanks to the original paed I saw. Apparently it is very common for people to be turned away as some paeds are not confident in snipping TT, especially posterior which can go undiagnosed.

Seriouslysleepdeprived Sat 15-Sep-12 21:58:17

I learnt I had tongue tie when DS was diagnosed. My mum still thinks she had 'the wrong type of nipples' to BF. She inspected them when I first bought DS home & said 'Ah yes, yours are much bigger than mine. Mine were too small you see.' hmm

She took medication to stop her milk when my sister was born, as she thought it would be impossible sad

lookout Sat 15-Sep-12 22:34:55

Does anyone know also about a possible link between lip tie and tongue tie and congenital defects of the midline or internal organs? It's something I keep hearing bandied around, but can't work out what it means or what it's based on

FamiliesShareGerms Sat 15-Sep-12 22:41:31

Just to say that I have a partial tongue tie. My mum stopped feeding me after a few weeks because I was making her red raw. As an adult, my tongue tie really doesn't affect my life: I can lick an ice cream, kiss properly and speak fine (all things on the other thread that people were worried about their children not being able to do). I can't stick my tongue out at someone, and I suspect I might struggle with some Spanish words with rolled Rs, and I would be a rubbish lesbian, but otherwise, please be assured that a partial tongue tie is not necessarily as terrible as some people fear.

Thumbwitch Sat 15-Sep-12 23:22:52

Mawbroon, thanks for that smile. I'll just see how DS gets on.

Something that I haven't seen mentioned on here (although I may have missed it) is the potential trouble for teeth with severe TT - because you can't use your tongue freely, you can't get it round the teeth to help clean the debris off them like people without TT do, pretty much unconsciously.

DH's TT definitely affects his kissing ability but not his speech; but I have a friend whose DS's TT was only picked up at 3 when I was teaching him to stick his tongue out and he couldn't and it definitely affected his speech.
Everyone is different!

I'm so grateful that the hospital BF expert, home-visit MW and paediatrician were all clued in where I had DS - sounds like there are some places where it's really hard to just get it sorted! sad
Now pg with DC2, I've already discussed it with my consultant and it will be checked immediately and divided even if there is only a small TT, because it made such a difference with DS.

mawbroon Sat 15-Sep-12 23:30:20

Yes, clearing debris off teeth. It's called oral toilet apparently smile

Orthodontic problems too. DS1's palate is very high (caused by the incorrect swallowing action) and there is not enough room for his top teeth and his bottom jaw is becoming bigger than the top one (should be other way round) because of the mouth breathing and tongue thrusting.

hazeyjane Sun 16-Sep-12 08:48:47

Lookout I haven't heard about the link between tongue/liptie and midline defects - if you have any links I would be very interested.

Dd1 was checked by a MW for tongue tie because she constantly slipped off the nipple and was a nightmare to feed, the MW said there was no TT, but a few weeks later a lactation consultant said she did have a tongue tie. We switched to bottles, because by that time my supply had dwindled and I was in a dreadful spiral of expressing, trying to feed and mixing formula and breastmilk, and my nipples were like a horror film. We never had the tie snipped, and now you can see she still has the heart shape when she pokes her tongue out and has a slight lisp. She also has reflux (is reflux connected?)

Ds has a tongue and a lip tie, he had no suck reflex when he was born, and was in SCBU, so was tube fed, whilst i tried to establish feeding. Again a MW checked and said there was no TT, but later when he was being examined by a paed because of feeding issues, she said he had a TT, lip tie and high palate. He also has severe reflux, (and an undiagnosed genetic condition which effects his muscle tone and his overall development, but that is another issue!)

<By the way - Thumbwitch - I didn't realise you were pg with dc2 - congratulations!!smile>

mawbroon Sun 16-Sep-12 08:56:27

Yes, reflux is connected. The incorrect sucking/chewing action can cause a lot of air to be swallowed down.

dr kotlow

Thumbwitch Sun 16-Sep-12 09:05:28

<Thanks Hazey! only about 3w to go now - eek!>

madscimum Sun 16-Sep-12 09:31:28

My TT has affected my speech, but not too badly. The main issue I noticed, and the reason I keep pushing to find someone who knew what I was talking about was that I had high palate, small jaw and some pretty extensive and painful dental work to fix it. I wonder, now, if my slow eating and occasional "drinking problems" (ala Airplane -- saw that recently!) are also related.

comixminx Sun 16-Sep-12 11:21:51

Very interesting thread! DS is four and a half weeks old and has been slow to gain weight: I've nor been overly concerned because his sister who is now 2 years old was the same and is otherwise absolutely fine. DA is gaining now though not as fast as he might do; feeding is reasonably comfortable for me but he doesn't always seem comfortable himself and certainly he never seems to open his mouth as wide open as on all the photos and diagrams. And talking to DP this morning (after reading this thread overnight after long feeds) he definitely has a TT and his mum wasn't able to bf him... So although feeding issues are minor at present, I think I'm going to definitely get it looked at properly, hoping it will improve things. (I have asked two mw's who have said he has no tr but given that others have been misassessed as many as 11 times I don't place that much faith in a negative assessment!)

Mondaybaby Sun 16-Sep-12 12:58:28

My dd's TT was missed by paeds, midwives and also a max fax Dr and a Consultant dentist who dd had to see at 5 weeks as she was born with 2 natal teeth. I was having an agonizing time bf and the community midwives were getting really fed up as they still couldn't discharge us after 3 weeks. They put so much pressure on me to ff her. They told me my breast milk was of poor quality!
In the end after crying hysterically down the phone to an NCT breast feeding counsellor it was the counsellor, OVER THE PHONE, who said it sounded like dd could have a tounge tie and told me to go to a local bf support group which was run by a specialist midwife who was an expert in diagnosing tt. Within 2 weeks I had been to the group, been referred to Kings College Hospital in London and had the snip. And from then things improved so much and I bf dd until just recently when she was 23 months old.

SummerRain Sun 16-Sep-12 13:03:57

Yel... Paed told me I was being dilly and his tongue wad fine.

Massive feeding issues and lack of speech.

SALT referred us to another hospital and he got the op there thank god.

Ive had issues with the first paed before though, he's a complete tool and I now refuse to accept appointments at his clinic, I ask for referrals to different hospitals.

elliebug Sun 16-Sep-12 13:11:14

Please say if I need to start my own thread but i am wondering if my 5m DS has a TT. I tried for 2 months to get him to bf and he never latched once despite support from various people he was born at 35 weeks so I think this was put down to him being early but I've noticed when he sticks his tongue out the tip looks like the top of a heart. Any ideas and does it matter? Thanks

Thumbwitch Sun 16-Sep-12 13:16:13

Sounds like a TT to me, elliebug. Read the thread as to whether or not it matters - it's not just about bf'ing, it's about other things as well - speech, oral hygiene, palate shaping - take him to the doc and discuss TT and getting it divided if possible.

mawbroon Sun 16-Sep-12 13:19:59

have a read of this

but don't be surprised if your doc/hv doesn't know much about it.

It seems that very often the parents have to take it upon themselves to learn about it and get the help they need for their children.

elliebug Sun 16-Sep-12 13:31:55

Ok thanks, have had a look in his mouth (while asleep!) and there is quite a bit 1cm ish of 'free tongue' in front of the frenulum and it doesn't look tight so I'm a bit confused now, will take him to hv and see what she says!!

mawbroon Sun 16-Sep-12 13:34:26

ds1 had loads of free tongue. He could stick it out really far. He had posterior tongue tie which tethers down the back of the tongue and restricts the correct movement.

Don't be fooled by appearances, it's not how the tongue looks that matters, but how it behaves.

Thumbwitch Sun 16-Sep-12 13:36:00
Thumbwitch Sun 16-Sep-12 13:36:44

Yep, and what mawbroon said, my DS's TT was posterior too but it still made one hell of a difference having it snipped!

madscimum Sun 16-Sep-12 16:53:38

I'm wondering if there are some experiential things (beyond the lists linked above) that are "signs" of tongue-tie?

There were several things that BF support and other people said to me that just didn't make sense with my experience. At the time, I attributed it to me being rubbish at motherhood and incapable where other people could clearly handle things better than I, but I now know it was because of the tongue-tie.

For example:
When asking, "how do I tell when she's done eating?" I was told to always offer more, and she'll refuse when she's full. But she never, ever refused. She never came off on her own except by falling asleep, and if aware of a boob, she always latched on. I didn't know what "refusal" was until after the clip.

I had several different HCPs ask at appointments, "Oh, is it time for a feed?" This made no sense to me. Of course it was time for a feed. My baby is awake, therefore she is hungry. I found it odd that they didn't seem to know this, since I had always heard "Newborns eat all the time". I now think that means, in fact, "Newborns eat frequently." Not literally all the time, which is what my baby did. I estimate we spent somewhere between 18-20 hours a day in the nursing chair with her on my boob. I found it difficult to find time to go the toilet, much less shower, etc. After the clip things immediately went to only 9-10 hours a day of actual feeding, and after a few weeks I couldn't even count it that way anymore because feeds only took 10-20 minutes. I'm not sure what the "normal" pattern is supposed to be for newborns, but I suspect we were spending much more time feeding than normal.

There were several things the books said to do "When your baby is alert, but not hungry," and "no sooner than half an hour after a feed." This completely mystified me -- this type of situation didn't exist: if it was more than half an hour after a feed and the baby was awake, she was hungry.

Does any of this sound familiar to other people?

elliebug Sun 16-Sep-12 17:00:44

Thanks guys smile thumbwitch that's really useful, I am only an hour from Leeds so if I have no joy with hv/gp it's good to know there is another option! I'm thinking it's better snipped than not cos by the time I know of it will cause probs it'll be too late! am secretly hoping someone will say 'thats an awful TT, no wonder you couldn't bf'!!

Rain1975 Sun 16-Sep-12 17:08:25

Was told ds had tt when he was a few minutes old and that it may cause feeding problems. Was in hospital for three days as had c/s and really struggled to bf. I kept asking about his tt but no one seemed bothered even when he had jaundice.

When home I asked two different midwives who came to visit and they didn't seem interested. I had a hard time bf my first baby so was determined that nothing was going to spoil my first few weeks with him. By the time I got to a bf clinic at 14 days I was mostly ff and when the advisor there said they didn't need to snip as it was mild I gave up bf completely. It really hurt and he was constantly crying.

Bottle feeding worked ok for us both until around six months and I started blw and he just couldn't move the food around his mouth and would gag and sick up everything he had eaten. Thought he would get the hang of eating eventually but after a couple of weeks switched to puréed and asked the gp for a referral. I had to be very insistent to get referred.

We finally had the procedure on the nhs at nearly ten months old and he can now tuck in with the rest of us. No anaesthetic and a quick snip. He cried obviously but there was hardly any bleeding.

I wish it had been done at a few days old.

mawbroon Sun 16-Sep-12 17:15:26

elliebug, as mentioned earlier in the thread, Cote Royd dental practice in Huddersfield are doing laser revisions.

mawbroon Sun 16-Sep-12 17:22:54

madscimum I could have written your post word for word about ds1. Except I didn't know he was tt at the time.

Everyone told me "but babies feed all the time" whenever I asked if it was normal.

Like you, I fed him whenever he seemed to need it and it was often up to 16hrs on the breast in a day sad

Naylor71 Sun 16-Sep-12 18:36:08

Madscimum - same as comment above, that was completely my experience too and I also kept asking the question - is feeding continuously normal and all mw and hv said yes it was and also being a first time mum, just believed them not having heard of tt.

wow, reading this I realise how fortunate I was that my sons tt was picked up at 3days old (due to problems latching on and serious engorgement - cabbage leaves all the way!) Had to wait 2 days for appointment as local hospital didnt have anyone who could cut it. 14 months later 2nd son was born and I asked what chances of having a tt was - told no higher than any other child, I asked midwife to check it as soon as he was born, yep another tt this time more extensive then ds1, cut the next day, again had to go the other hospital for it.
I still get people that look at me blankly when I mention that they had tt but I've got used to that now.

All 4 of mine had TTs. I'm not sure any of them were diagnosed by anyone but me, but when pointed out, Dr's Hvs etc all agreed with me.
I had no trouble feeding, they all gained weight and none of them were snipped.
They all fell over and broke their ties by the time they started school.

Wewillsee Sun 16-Sep-12 21:03:43

Yes, told by several breastfeeding counsellors and the hospital infant feeding coordinator that my DD definitely didn't have TT. She did. Still angry that it took a private lactation consultant to finally tell me why I couldn't breastfeed without being in absolute agony. Thank god someone finally spotted it though. I wish there was more awareness about this.

Loueytb3 Sun 16-Sep-12 21:28:29

The position about detecting and treating tongue ties makes me just furious.

DTS1 has a tongue tie. He was prem and no-one mentioned that he had a tongue tie to me, despite being checked by several paeds because he was borderline for going to SCBU. Feeding was always painful, although I eventually mixed fed him for 5.5 months. I could only get a decent latch in rugby ball position despite lots of help from the BF peer supporters in hospital (who also didn't mention tongue tie). I just assumed the pain on bfing was normal. He gagged on solids for ages and really struggled with lumps.

I eventually realised he had a tongue tie when he was just under 3 because his speech was appalling and was doing some googling and it came up as one of the causes of speech problems. He was already in the NHS system for developmental delay and under speech therapy but they hadn't picked it up either.

I went to the GP who referred to paeds. Paeds bounced him to community paeds as he was already being seen by them. Community paed agreed he had it but refused to do anything about it as he didn't feel it was affecting his speech. Speech therapist also didn't think it was the cause of his speech problems and said there was no evidence that cutting it would improve his speech. We left it for a while. Until last summer when the speech therapist attached to his school mentioned it to me. She thought it might help his speech to have it cut but she couldn't say either way. She said NHS generally won't cut it now because of funding issues. His speech is still very unclear but he can make the sounds that are normally affected by tongue tie. However when he puts it all together his speech becomes unclear. He can't clean around his mouth and he can stick his tongue out to his teeth but no further.

So we have now got GP to refer us to an ENT surgeon. Fortunately I get medical insurance through work and they are going to cover it. I am interested to hear about the laser surgery - but we are in London. Is there anywhere else that does it?

The story doesn't end there, having had one child with it, I was more alert the next time round. DS3 turned out to have it as well. Not picked up by paeds, midwifes or nurses in SCBU where he spent several days. I couldn't get him to latch on more than a second with it being pure agony. Put it down initially to him being prem and little. When I realised he had it at 5 days, I spoke to the midwife who was incredibly dismissive and said "oh yes, he may have one, but they won't snip it around here anyway..." I found a private lactation consultant who came to my house and did it. We never did get the hang of bfing, despite her help but at least he won't have the potential speech problems that his brother has.

And I think I may have had a lip tie as I had an operation when I was a child to remove some tissue from between my top teeth so that they could be pushed together.

Why don't they routinely check for them??? Makes me so angry

mawbroon Sun 16-Sep-12 21:51:53

There is a dentist in London waiting on his laser equipment and should be up and running soon AFAIK Loueytb3

Loueytb3 Sun 16-Sep-12 22:07:51

Do you know who the dentist is or how I can find out?

perfectstorm Mon 17-Sep-12 02:08:17

I actually envy those whose newborns ate all the time. DS shut down to conserve energy after the first 3 days of constant sobbing for the breast. I was complimented on how easy he was. Then he was weighed.

Thumbwitch Mon 17-Sep-12 03:20:30

sad perfectstorm.

madscimum - I did get breaks between feeds, but each feed lasted for a minimum of 2h. I could only feed DS lying down, it was the only way he could do it - so I spent an awful lot of time in bed. When the home visit MW came to see me after 5d, she asked how long feeds were taking and that was another factor in expediting the paed referral - 2h is way too long. After the snip was done, it took a while but eventually DS got down to the far more normal 30-45mins. And the pain reduction was fantastic!!

It's such a tiny operation when they're newborn, I can't imagine what the funding issue is (except paed time, I suppose) - a sip of sugar water, a dab of novocaine (dental anaesthetic) and a pair of sterile scissors - took 2 mins to do it. As opposed to waiting, finding out at 3 that speech etc. is affected and then needing a GA, theatre time, far more medical care and attention - it's madness!

Still counting myself VERY lucky to have had a good hospital where DS was born.

Napdamnyou Mon 17-Sep-12 04:43:02

madscimum yes,exactly our situation!

Sobbing exhausted baby who soon became totally overtired - literally feeding all the time - painfully, for both of us - never getting enough sleep, or milk. Grim.

Napdamnyou Mon 17-Sep-12 04:43:40

perfect storm sad

DairyNips Mon 17-Sep-12 05:10:07

My ds1 had a tongue tie, not spotted till he was about a year old by an slt. I mix fed him from 3 weeks because of pain feedingsad

Ds2 was never diagnosed but I'm pretty sure he has a posterior tie. Managed to feed him till 16 months but it hurt for the first 5 months on and off.

Now feeding ds3, have suspected posterior tie but none of the HCP's I've asked have diagnosed it. I asked a lady who was checking him over in hosp of she could check for tongue tie and she said they only check for that of baby not feeding at all angry

lookout Mon 17-Sep-12 09:06:57

Loueytb3 his name is Dr Malcolm Levinkind and if you google his name you will find him smile we're waiting on him, as the round trip to Huddersfield is just too much for us.

Mummyinthedark Mon 17-Sep-12 10:30:27

Just caught up with this.

We didn't know our second DS had tongue tie until his dentist asked us if we had thought about having it treated - this was about a year ago when he was 7.
We had wondered about the issues he was having speaking clearly and enuniciating some sounds but weren't sure if it was something he would grow out of with practise. We had noticed his tongue was less mobile than his DB but hadn't realised how much this was affecting his speech.

The dentist (who only treats children) is very experienced with tongue tie cases and has a partner who carries out the operation. She doesn't recommend it before children are about 10 (if it hasn't been dealt with when they were new born) because of the changes still occurring in the mouth until then and because of the stress/psychological challenge for a young child having this sort of procedure.

I now realise why he was more difficult to breast feed than DS1 - rather too late!

If anyone wants details of the dental practice please PM me - they are in central London and cover orthodontics as well as standard dentistry for children and I have been very impressed with them.

Loueytb3 Mon 17-Sep-12 11:31:30

Thanks lookout

Mummyinthedark 10 is a long time to wait to have the op if you are struggling with speech problems. They then have to relearn how to talk.

mawbroon Mon 17-Sep-12 11:37:15

I agree that 10 is a long time to wait. As well as speech problems, tt can also affect craniofacial development which is pretty far on by age 10. IIRC, craniofacial development is something like 90% complete by age 12.

DS1 just had his tt done with laser last week under local anaesthetic and coped just fine with it (he is 6)

comixminx Mon 17-Sep-12 16:36:12

The iPad just ate my long post, but perfectstorm, really sad for you.

madscimum, your post is ringing bells here. No diagnosis for DS as yet but I am getting a referral to a paed who hopefully will be able to confirm tt; or at least I hope so because that is more and more what it is feeling like to me, esp given DP's tt and the fact his mum wasn't able to bf him though she'd fed both his brothers beforehand, and one of his brothers has a cleft lip, ie a midline defect. (Of course the GP we saw this am about the referral was pretty dismissive of DP's tt, which made me a bit cross.) Let's see...

mawbroon Mon 17-Sep-12 21:08:49

Bump, anyone else?

lisad123 Mon 17-Sep-12 21:09:04

Yep sad

perfectstorm Thu 20-Sep-12 16:18:30

mawbroon, thanks for the info on laser. DH has agreed to get it done, when he's been adamantly opposed to general (understandably). And I would like them to take a look at DS' lip, too, because he purses a lot and to my very inexpert eye (could never see an issue with his tongue one either, whereas medics grimaced) his top lip frenulum looks tight.

I'd never even heard of a lip tie. And given the othodontic and breathing issues DH has had, and that my DS isn't quite 4, I really, really want to get it looked at when he's so diddy. I am so very grateful. I can't say how much, but with a child with a tt, you will know what this info means to me.

And thanks for the sympathy on DS's first weeks to people, too. I honestly don't think about that time at all any more, but it makes me shudder when I do. I so hope the campaign does happen next year, and that it helps avoid so many other babies and women being in our shoes.

comixminx Fri 28-Sep-12 21:25:08

Just a quick update - went to see a tongue tie specialist today, finally, and got action at last - DS has a 25% posterior tongue tie, with significant enough impairment that it was definitely worth snipping - now done. That's in the wake of 2 midwives and 1 GP telling me that he didn't have a tongue tie, ho ho. First feeds after the op went well, he's been grizzly some of the time since then and didn't enjoy either bottle or breast feeds this evening, but has fed well overall. And he is sleeping so he can't be vastly uncomfortable...

I really owe you guys on this thread a massive vote of thanks for writing about it, especially the experiential post of madscimum, which rang enough bells that I had to take it seriously and investigate it properly. Hopefully it'll be onwards and upwards with breastfeeding now!

mawbroon Sat 29-Sep-12 09:58:14

Good news comixminx

aamia Sat 29-Sep-12 11:01:21

Any recommendations for private people/places to get a tongue tie cut? I'm in Bucks but happy to travel within the southeast. Have found a few places on the internet (one in maidenhead, one in windsor) but would prefer recommendations!! It's a very obvious 75% tie.

lookout Sat 29-Sep-12 13:02:46

Sarah Bridges ICBLC in Eton is very good, she did my son's here, and Luci in Chiltern is apparently good too, a friend used her twice here

comixminx Sat 29-Sep-12 15:02:46

Luci in the Chilterns (Princes Risborough) is who did my DSs TT yesterday: can definitely recommend her.

Loueytb3 Sat 29-Sep-12 19:08:27

We used Luci too and she was great. Would definitely recommend.

CH2207 Sun 07-Oct-12 23:12:28

Another name for the list. When my son was born he lost weight, screamed, midwives and doctors told me (wrongly) that I had no milk, he was formula fed while I wept, he screamed more, I tried to nurse as supply dwindled, eventually at 4.5 months reflux diagnosed and Infant Gaviscon prescribed. I worked for 9 months to relactate (eventually succeeded), but reflux got so bad by 15 months that son was hospitalised... following which he was put on extremely high (adult) doses of PPIs and I went on an elimination diet because of his almost universal food allergies (all of course initiated by aerophagia and formula use)... He's now 3 and medication free because we're successfully curing reflux with GAPS diet (and still nursing) ... But professionals managed never to look inside my son's mouth. Consequently PTT and LT only diagnosed at 20 months. I'm a member of the FB group mentioned earlier which is a brilliant resource. And have had contact with Dr Kotlow who is also brilliant and tireless in his work for TT babies/children. Considered trip to Albany but with (at the time) unwell toddler on medication and special diet it felt like too much to handle. Now hoping to see Dr Levinkind when he gets his TT clinic up and running...

pommesdeterreetfromageblanc Fri 02-Nov-12 14:02:47

I saw three people who did not think she was TT... saw a specialist this morning and she was. I have been in pain for 10 days, thinking of giving up BF every day... I hope this will sort it.

TheNameisNOTZiggy Fri 02-Nov-12 14:31:11

Signing in! Had problems bf from birth, mws never mentioned TT, in fact I kept being told "well, big nipple, small mouth, so you will have problems", grrrrrrrr - what no help to solve it?!!!.
Paid private LC who diagnosed PTT, mw agreed! Went to LC qualified to snip it recommended by MW. LC%232 said it was too mild too treat.... Still having bf problems and baby not gaining weight. Eventually at 4 weeks I threw toys out of pram and made a last ditch attempt to get bf on track. Spoke to LC%231 and went with her original recommendation for a LC qualified to snip.
Wow. Difference was immense. Suddenly my nipples were not squished and sore. Of course by this stage my milk was drying up and baby was scarily skinny. So had another 4-6 weeks of nightmare pumping and feeding until baby filled out and looked less like a pixie. Now at almost 6 months he looks amazing and feeds really well. All the effort was well worth it. However I have a lot of bad feeling towards to HCPs we came across originally as I feel they did little or nothing to help.
Breast is best until there is a problem... Then the nhs runs out of steam as they know formula will solve the baby's weight issue. They just don't address the underlying problem. V sad. sad

Baby also has a lip tie but not sure of the implications of that now or in the future.....

TheNameisNOTZiggy Fri 02-Nov-12 14:34:38

We used Mary Griffiths. Ann Dobson came highly recommended too and a friend used her. Both are LCs and come to your house to treat. Our PTT took just seconds to sort. She spent a couple of hours with us - taking history, watching a feeds, helping to address latch. Highly recommend her.

purpleflower123 Fri 02-Nov-12 14:49:37

DD2 has a mild posterior tongue tie. She can push her tongue out. I asked a midwife who said no and the HV said she didn't know what to look for. A BFC referred her to the local TT clinic who said yes it's there but he wouldn't release a posterior TT so sent us to Kings college hospital in London (We got 1 day notice to arrange sitters for DS and DD1 and for DH to take the day off work).

After waiting for hours (DD2 was the eldest baby there at 12 weeks and they did it in age order as they were starved) they refused! Said it was very mild and the risk out weighed the benefit as it was between two big veins. They told me it was positioning and latch and then didn't really help. They told me that at 12 weeks she was too old to feed in the cradle hold position, I had to sit her on my lap facing me but her latch was worse that way. I didn't even get any of the follow up we were promised. I have persevered and DD2 is still BF at 10 months but it still hurts.

purpleflower123 Fri 02-Nov-12 14:52:18

They also said that it couldn't be that bad as DD2 was putting weight on extremely well and thriving. It came across that as long as she was ok my pain didn't matter which is why I just put up with it sad

mawbroon Fri 02-Nov-12 15:29:16

Oh this makes me so sad and angry.

Purpleflower, where are you based? We had ds1's ties (lip and ptt) released here It was worth the 480mile round trip to have it done properly.

He is 7yo and I have posted extensively about all the health problems that he has suffered because of untreated ties. It is about so much more than just breastfeeding.

I would urge everyone to please learn about these ties and have them revised if you possibly can

NatashaBee Fri 02-Nov-12 15:36:07

Oh yes. I struggled for 2 weeks to breastfeed, eventually gave up as DS rarely even attempted to latch on in the end, just got distressed. I spent hours with a BF counsellor faffing around with different holds, nipple shields etc. I expressed for about 8 weeks but my supply dropped off. I only realised the problem when I googled for tongue tie pictures on a whim after reading it on here. It seems to have resolved itself now but I guess we'll find out for sure when he starts talking properly.

Curtsey Fri 02-Nov-12 17:09:21

Yep. PTT. Found out from the internet but was fobbed off by 3 different health professionals because she was still latching and feeding fine though weight gain was very slow, my nips were very cracked and she was a screamer. Got a private LC in the end and she was snipped at 14 weeks.

AngelDog Fri 02-Nov-12 18:09:17

Joining in too. DS2 has at least some tongue/lip restriction. HV glanced in his mouth and said, "no tongue tie - but he's had the check by the paediatrician at the hospital, so you know that anyway."

fotheringhay Fri 02-Nov-12 20:35:53

Me too. It hurt more than I thought it should so I nagged every midwife/health visitor/BF supporter I could find for 10 days until one eventually diagnosed it.

Very fortunately we got it snipped the next day (North Bristol NHS trust), and feeding was immediately much more comfortable. I wouldn't have carried on otherwise due to the pain.

This is such an important issue, thanks for starting the thread.

pommesdeterreetfromageblanc Fri 02-Nov-12 22:05:27

Hi fotheringhay Did you have your baby TT done in St Michael's? We saw the lady there today, what a star! I don't want to count my chickens but I think it feels a bit more comfortable already.

fotheringhay Sat 03-Nov-12 08:46:23

No, Southmead hospital. Hope it keeps on getting more comfortable for you smile

pommesdeterreetfromageblanc Sat 03-Nov-12 12:04:43

fotheringhay It is not quite settled yet but she seems to feed quicker so that should help. I am going to Southmead for a BF clinic on Wednesday.

fotheringhay Sat 03-Nov-12 17:41:06

Best of luck pommes

Notafoodbabyanymore Wed 21-Nov-12 05:49:06

Signing in (late!) DD had tt, missed by all midwives and health visitors, ripped my nipples to shreds and made the first few weeks miserable.

Finally diagnosed by wonderful BF counsellor, snipped, and BF until 18 months.

I still have scars on my nipples.

KafCurt Tue 22-Jan-13 08:02:06

Please can everyone read, sign and share with others our petition to get Lip Tie checked at birth: http://epetitions.direct.gov.uk/petitions/44390.
To follow our campaign please like us on facebook at: www.facebook.com/LipTieSupportGroup

Thanks!

Kytie Mon 08-Apr-13 22:22:08

Hi my baby has had tonguetied cut 3 times and each time reattached so depressing .he has found of feeding okay but small amounts and so often .i was wondering if to have cut a 4 time .but then it could reattach again it would be so great to get that feel good factor of bfeastfeeding and for olly to feel happy and full after each feed has anybody been in this situation where a posterior T T keeps reattaching .part of me feels not to put him through it but its so hard for him to stay latched and fed like trying to suck milk out of a slightly squashed straw .these poor babies x

Yep!wow, it's so common according to this thread! DS had/has a ptt, snipped after the most agonising 4 weeks ever. Stayed 4 days in hospital and couldn't get him latched on at all, must have seen about 8 different midwives, lactation consultant etc...LC said "he does have a tt but lots of things are blamed on tt, you need to sort the latch" with me crying my eyes out.

It's an absolute joke, made me really angry. Eventually the HV reffered me to tt clinic who said it was a very tight ptt. However, I didn't get any follow up or told to massage/stretch it. I am pretty sure it's grown back and that he also has a lip tie. It's still painful to feed and he's nearly 10 months.

Has anyone had it snipped again so late?

Kytie Tue 09-Apr-13 22:53:36

Hi moresnowplease my baby olly is now 5 months old and still not sure whether he's too old to have it snipped again he can stretch his tongue out so T T not as thick as it was but he won't open his mouth very wide it can be painful and I do think a lot of it is bad habits and I think he could open wider but he chooses not too ! So stressful and a lot of my friends have suggested doing formula but I just couldn't imagine not bfeastfeeding my baby my other 3 children fed so well and over a year so I knew something wasn't right the TT was missed by GPs and midwives .there needs to be a lot more support for mums and babies with TT it's so emotional .things have got bit better last few days as I'm giving olly baby baby rice and he's not so hungry and easy to breast feed when he's not starving hungry .all the best Kate

Kytie Tue 09-Apr-13 22:57:59

Sorry meant to asked is a lip tie easy to see as I think olly may have one do you what that can affect ..?

Kytie Tue 09-Apr-13 23:28:39

Does having lip tie snipped help with latch and bfeastfeeding and does anyone know if N H s will do operation and wondering can they reattach like tonguetied can ? Thankyou

Kytie Tue 09-Apr-13 23:29:39

Does having lip tie snipped help with latch and bfeastfeeding and does anyone know if N H s will do operation and wondering can they reattach like tonguetied can ? Thankyou

Kytie Tue 09-Apr-13 23:38:36

Can a lip tie be snipped by the NHS and wondering if they can reattach like tonguetied can ? do they affect bfeastfeeding a swell I think I wll have it snipped if it does affect too .thankyou

Kytie Wed 10-Apr-13 09:50:01

Hi think my baby is lip tied as well as tonguetied does lip tied have big impact with breast fee ding as T T been cut .may have lip tied cut too and wondering does anyone know if NHS will do this procedure as I paid privately for T T...? Thankyou

Shellywelly1973 Fri 12-Apr-13 00:23:50

Dc5 still has tt & a lip tie. He's 4 now. No one listened & i ended up expressing for weeks until supply dried up.

When his teeth grew down the lip tie was so bad it extends down between his front teeth. He's currently been observed at Eastmans Dental Hospital. Lip tie generally isn't cut unlike tt.

Ds has no speech problems & the lip tie, though not nice to look at, causes no problems now.

Kytie Fri 12-Apr-13 23:12:02

Thankyou shelleywelly it does seem a shame they don't divide lip ties like tonguetied as I have read it contributes to a poor latch for a baby to breast feed as a T T can . And affecting formation of teeth .be interesting to find out if they do cut in Britain and where as I would have it done my baby has a severe lip tie .they do it in America at the shame time when a T T cut .thankyou Kate.

10oclocknews Sat 13-Apr-13 23:32:29

Anyone got any experiences of TT and bottlefeeding?? My DD is 4 months old, but feeding her has always been an issue. She has never fed comfortably. Dr said it was a lactose intolerance at 9wks old and prescribed colief. Didn't see much improvement apart from poohing better. Went back at 11 wks and Dr said silent reflux and prescribed Gaviscon. I definately saw an improvement in her nature and she was much calmer and more relaxed between feeds and seemed generally happier. However, she still fusses when feeding.
She will cry for her bottle and shows all the signs she wants it, but after a few sucks she pulls off the bottle then tries again and so on and so on. She may get a little rhythm going, but then stops and chews the teat. She seems like she is sucking really hard too and makes a clicking sound a lot and sucks off the teat (hard to explain really but its like if you suck your cheeks in really hard and do kissy lips, it will eventually make a kissy sound and your lips will pop open????) I have changed to faster teats and tried variflow but it hasn't made a difference.
It can take an hour for her to have 7oz. I have to give her lots of rests in between and sucks of her dummy to alay her frustrations and stop her going into meltdown. I thought maybe she isn't very hungry, but she even does this with her first bottle of the day after 8 hours of sleep??.
Im not sure if she is just fussy or if there is an underlying reason. She can stick her tongue out and is putting on weight perfectly. TT crossed my mind a few weeks ago, but not sure if her symptoms are TT indicators??? DD is my second child and DS1 fed brilliantly, so this is all new. My mum feels she is just fussy, but I can't help thinking there is more to it? She id perfectly healthy but I don't feel feeding should be stressful??? Any thoughts?

Kytie Sun 14-Apr-13 22:33:42

Hi 10 o'clock I think you may need baby to be checked for T T seems very similar to my baby who's got T T although I'm bfeastfeeding they do lose there latch on and of and feeding is hard work .i do sympathise and feeding is so stressful with a T T .hope things get easier for you

Lala83 Sat 20-Apr-13 16:28:31

I never ever write on here but thought my story may benefit someone.

Had same problem as most. RVI hospital didn't even check baby feeding, no HV came until I called them after two weeks as my notes were 'on the fax machine', they missed the tongue tie as didn't even check his mouth. I got mastitis and had a near hole on one nipple. When I asked about it at the 12 week check, HV said she'd checked last time and it was fine and definitely no tie. Eventually through my own suspicions I went to doc who said yes it was tied and referred me to specialist. By time of specialist visit he was exactly 8 months old. They wouldn't cut at that age without GA and said it wasn't necessary for speech but I kept pushing and got agreement to not need any more referral but just to phone back at 12 months for an appointment. He is now 15 months (waited on waiting list since 12 months) and got it done yesterday. Went in at 7.45, in operating room at 9 under GA. In recovery room 5 mins later. Dr said it is barely an operation as it is such a quick snip. By 9.20 he was awake again, had a feed, then by 9.45 running round and eating quavers and banana! Not bothered at all! His breast feeding now is a little more with tongue, no idea yet how it has affected language and oral hygiene and I may never know!

Things I have learnt for next time via the Internet!
- not proven but anecdotally TT is hereditary
- TT can be spotted by bobbing on breast, squirting milk out of sides of mouth, very sore nipples (one of the many ways for this however!), heart shaped tongue and not sticking it out to copy mummy.
- it probably won't effect speech, but it can. I thought the relatively minor risk of 20 mins under GA at his age was better than a big speech problem or issues with oral hygiene, ice creams etc later in life when the skin is thicker and the op is much more painful. NHS and NICE don't see it like this, they like to take the wait and see approach. That's ok if you don't mind the speech therapy involved. No one could tell me how our Italian child would cope with rolling his R's.
- kissing seems to be a big deal to a lot of people who have TT and many people seem to wish their parents had just done it for them when they were little.
- the NHS tend to under diagnose it. Bearing in mind something like 1 in 10 have this condition.
- your max deadline without GA is 8 months but I really encourage you to push push push to have this done as soon as you spot it. Otherwise you have to wait until after 12 months and have it done under GA
- if you have trouble and it is taking too long, there are lots of midwives and places who offer this privately for about 120 quid. Worth it to not have to put your child under GA later!
IMHO everyone should have the right to stick out their tongue!

whoopwhoopbib Sun 21-Apr-13 07:28:26

I have posted before about my dd's tt which was missed by all of the midwives at the hospital, we stayed in for 3 days so we saw quite a few, 5 community midwives and 3 bf peer supporters, one of whom people rave about but I found her to be the most condescending cow imaginable!

At a bf group recently one of the nursery nurses went on some further training with midwives and they were told they were over refering to the tt clinic!! This makes me feel so so angry because it is hard enough to get anyone to notice the tt let alone have them now think they shouldn't refer.

Luckily we managed to get dd's snipped at 4 weeks but we had to contact people ourselves. I still feel very sad and angry even after 13 months so I think I might leave this thread for today and pop back when I feel up to reading it smile .

u32ng Mon 22-Apr-13 07:50:45

sad My DS is 11wks and I am thinking he has tongue tie that's been missed, especially reading what everyone else is saying on here.
I was told by MW & HV no tongue tie even though I asked about it;
I was in hospital for 4 days after his birth because of latching issues & he was more of a 'chomper' which resulted in mashed nipples for me!
He also would fall asleep within minutes of going on the breast;
Now he smiles more I can see he has a small heart shaped tip.

I was expressing for weeks (without much success) on the hope of being able to pick up bf later, but he started preferring the bottle (no surprise if it was such hard work at the boob!) so I gave up 3 weeks ago sad. I'm going to pursue this again now, and if it turns out that he does have tongue tie after all I'm going to be so disappointed!! (And peed off!)

whoopwhoopbib Mon 22-Apr-13 20:33:27

u32ng that's exactly what my dd did when she fed, she would chew rather than suck which was agony for me. My hv said she would refer my dd but I already had an appointment to see someone so that might be worth a try.

If I was in that situation again I would ask every person possible to refer me but without telling them that I had already asked other people iyswim.

I hope you manage to get it sorted x

HeadFairy Mon 22-Apr-13 20:42:16

My ds had terrible trouble latching, I had all the classic signs. Really long feeds (2hours plus) and ds not gaining weight (he went from 7lbs7 at birth to 6lbs13 and stayed there for 6 weeks), lipstick shaped nipple with white patches after feeding, terrible agonising pain. Somehow I was so grimly determined so I hung on, expressing to top up (I got that bit right at least, hired a super duper double pump at great expense but regularly got 20-30oz a day out!). I don't think his tongue tie was that extreme because after about 4 months he was back on track. Feeds were always long, but his latch improved immeasureably.

I was told that if a tongue tie wasn't too extreme they could stretch eventually and self correct. I don't know if that's right, but that's what I assumed happened to ds.

With dd (born in a different hospital - one with much better post natal care and bf support) she was diagnosed with TT on her second day (I was in for a cs) and corrected on day 8. The difference was incredible. They took her away for a minute, brought her back with a bit of gauze in her mouth and asked me to feed her. She instantly latched and it was completely comfortable, she managed a whole feed in about 5 minutes and we never looked back.

u32ng Tue 23-Apr-13 02:02:52

Wow.

This is going to sound terrible, but already want a DC2 so that I can have another go at breastfeeding. I thought I'd knew it all about bf before DS but tongue tie wasn't on my radar. Now I know & it will be first consideration if I ever have the same problems again!

Kytie Tue 23-Apr-13 23:15:05

My baby tonguetied was cut three times and the fibres still reattached but thinly enough to stretch and with the help of paying for cranial oesthopath which I would highly recommend .at the age of five months he breast feeds lovely .i will never forget those first stressful months of forever feeding .i just couldn't ever imagine not feeding my baby I never knew how much a tonguetie can interfere with bfeastfeeding as my 3 other children feed lovely with no problems .all the best k t x

Mamasbelle Tue 18-Jun-13 23:40:16

This is the Facebook address of the group : https://www.facebook.com/groups/tonguetiebabies and it's page: https://www.facebook.com/TongueTieBabies for anyone searching for info, practitioners etc. Lots of info there about upper lip tie which isn't really recognised here. HTH

Grannyapple Sat 03-Aug-13 19:41:56

Hi...I've just found this thread.. DS had a server posterior tongue tie (diagnosed at birth)...snipped day 10 at kings college hospital in London..but milk supply not great..mix fed til 7 wks them fully switched to formula.

I've just had DD on Tuesday & I asked for it to be checked straight away..was told "it's not a sever one so should be ok" but I asked for specialist bf support..wasn't forthcoming by 4pm the next day in hosp, so I asked to be discharged. Have found a lovely private lactation consultant who came round to house today to snip DD's TT..hers is a severe anterior one. This is day 4 so milk had just come in, but I'm noticing a great difference already... Trick is to get it corrected as early as possible & as close to milk coming too.. The LC does some of the clinics at Kings too..

She says research suggests a link with TT & folic acid supplements, but the benefits of FA far outweigh the cons in these supplements so advice unlikely to change. Also possible hereditary link (from fathers side) too...

If anyone is in south east England & London area & would like details of LC for the TT, pm me.

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