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

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