Tongue-tie - your experiences please?

[fleacircus]

After nearly ten weeks of constant pain and misery, I discovered on Friday that DD is tongue-tied. I've begun reading up on it and the BF counsellor is making a referral for the procedure to resolve this, but I'd really like to hear from other mothers whose babies have been affected by this.

Thank you.

Flea circus there is another poster "Sallypoo" who's little chap was born new years eve.. she too found out last week that the problem with BF was tongue tie..
will try to find link to her thread.. you could help each other out!

thread here

hi fleacircus - there are at least 2 mums on the jan postnatal thread who have their LOs tongue tie snipped and another waiting to have it done. will link this thread on there.
my advice - get it done, and push for it if your nhs isn't keen, ds1 has it and i was told they wouldn't do it until/if speech probs occurred, grr.

I don't have personal experience but know someone whose ds had his corrected at about 5 weeks.

my ds had quite a severe tongue-tie (wasn't spotted at hospital or by midwives, health visitors or me! dh noticed!) He had it snipped when he was 4/5 weeks old. The snipping was really no big deal...took a second and he didn't appear to feel much pain.

In some areas it is harder to get it done than others. And mild tongue ties can often either resolve themselves or not cause any problem.

We decided to do it as his was quite bad, whilst he didn't have too many problems breast-feeding I was concerned about speech problems later on.

If you do decide to get it done try not to stress about the snip - it wasn't half as bad as I'd feared!

Thank you - it's making me feel better about it just to hear positive experiences. So far DD is managing to feed and gaining weight really well but I've been in constant pain and have reached the point where I can see myself switching to FF if things don't improve, something I'd never imagined doing. DP is also reaching breaking point, he's been incredibly supportive but has found watching me suffer extremely difficult.

Hey fleacircus - DS (9 weeks) had his tongue tie snipped last week after I went to the (second) GP about it.

The irony is that snipping the tongue tie didn't actually improve BF as his main problem is my forceful let-down which means he doesn't actually need to latch properly to get any milk.

As for the procedure - it took 5 minutes in Bradford Royal Infirmary (I had to wait for over an hour though ) - the nurses swaddled him, rubbed some local anaesthetic under his tongue then the paediatrician came in and snipped it with a pair of blunt-ended sterilised scissors. DS smiled throughout the whole procedure as he got so much attention!

Hope this helps

hi fleacircus
i had this with my last baby (now 2yo)
he was feeding ok, gaining weight ok... just v painful. had a fantastic mw who spotted it and made some calls, got it sorted and it was INSTANT relief

pester them to do it asap - you wont regret it.

in retrospect i think this was a prob with no1 baby too... but was never spotted and mush have resolved itself to a bearable point. being my first, though, i just assumed i was doing it 'wrong'. was a tough time.

glad youre getting sorted

My DD (now 13 weeks) had tongue tie. She's my third child so I knew the latch wasn't right, so the midwife found the tongue tie when she was one day old. She couldn't open her mouth far and was basically chewing on my nipples - it was very painful.

I got the tongue-tie cut when she was 9 days old and it really improved feeding. After the bruising etc went away, I still had a painful letdown for a few weeks, but she started getting a proper amount of milk. I also introduced 2 bottles of formula a day at 4 weeks because I've got 2 older kids and had to get off the sofa sometimes.

Her weight gain was slow for the first month, but improved after that. At her lowest, she was on the 4th percentile. At 8 weeks, she was on 25th and now she's on the 50th.

The operation itself took a couple of seconds. She cried but was OK once I got her feeding afterwards.

I'm so glad I got it sorted. I would never have continued breastfeeding if it stayed as painful as it was in the first 9 days.

I also know someone, whose son had really bad weight gain problems and they didn't find the tongue-tie until he was 5 months old. It could have been sorted so easily if it had been spotted earlier.

my daughter was tongue tied too now 6 weeks - didnt discover it until 3 weeks of agonising bf.

Had it done at kings it takes about 2 seconds to do and within moments the baby is on the breast and feeding.

Definitely get it done. Mt dh tongue tied and dint get it done and cant say "th" can lead to some speech issues apparently

fleacircus - like yours, my ds was gaining weight, but every feed (and most times in between) were really painful for me. Finally got referral at 4 weeks, and the snip (at royal free in london). he waas one of the rare babies who bled a bit, but he was happy even while bleeding so definitely no pain for him. result: bf is mostly pain free now (though it took a few days for my nipple damage to heal), and feeds are more efficient too, so we get to spent less time feeding and more time playing.

definitely get it done asap. i wish it were easier to access - took me weeks of asking different hv and mw till I found someone at a bf group who would refer me.

let us know how it goes.

My dd was happily gaining weight (on the 98th centile at birth and stayed there) but the pain I was in was unbelievable and I had wedge shaped nipples. It was snipped (divided) when she was about 20 days old it was over in seconds - they brought her in crying, I stuck her on the boob she fed and that was it

I had my dd just two weeks ago, the paed identified her tongue tie within hours. My midwife referred me to a Dr in Taunton as our health authority does not provide the snip. Whilst she was able to feed it was sore for me. I was also concerned that she could have trouble later with weaning and speech development. So we took her to the Dr who did the procedure privately for a nominal sum. DD was more upset by his finger in her mouth than the snip, just two spots of blood and straight away she fed.
She is now adjusting to feeding with her whole tongue, it is better for me and I am pleased it was done earler rather than later.

Haven't read whole thread, just wanted to add that DS was TT - I spotted it myself around 6 weeks or something. No snip, we persevered and the feeding got much better around 10-12 weeks.

He is speaking now (2.2) and he is very clear with no apparent lisp.

HTH

Hi, My younges ds (now 4) had a tongue tie that was noticed by the midwife, who had spent ages trying to help my bf in agony, and we were told that our area didn't agree it was important to snip the tongue tie!

Bfeeding was just too painful and we made the switch to ff, he also has had significant speech and language difficulties, and whilst i acknowledge that this wasn't just down to the tongue tie the difference when he did get it done at three and a half years old was imense.

My advice would be to get it done as soon as possible, I bitterly regret I didn't make more of a fuss about it when he was tiny, as the procedure is so straight forward when they are babies whilst my son had to have a GA to have his done.

hi. my ds1 had tongue tie. it was divided when he was 2 weeks, only took a few seconds, and he cried more from being held still than the actual snip. it definitely helped with the soreness; i would have stopped bf if it had not been done.

i have an adult friend with tt who had a dd with it - they had it snipped although bf was fine as he said he wished it had been done for him when a baby. he was teased at school for it.

a lot of doctors don't believe it makes a difference to bf and so don't do the division. however there is only a tiny or no risk, so as a doctor myself i thought it was worth a try, and it did help.

you might like this article in the telegraph in january here. In the southampton series of 10 000 babies, only one had a mild infection.

good luck

Hi

My dd3 was TT and it was noticed by the mw when she was a week old. We had to push and push to get it divided - the MW said that she was powerless to do anything and the HV said to leave it and they'd give her a couple of years of speech therapy when she was 2

She was feeding well so they didn't perceive it to be problem - it wasn't a problem for baby, but it WAS for me! It was agony to feed and dd was feeding every 1.5/2 hours constantly with no respite whatsoever. I went through tonnes of lansinoh (God Bless Lansinoh )

Dd finally had her tt divided at 13 weeks as the consultant refused to do it till she was 13 weeks because he insisted that she needed anaesthetic (even though i pointed him towards the research that said she didn't )

Anyway, the affects were immediate - dd latched better and began feeding every 3.5/4 hours so my nips mended nicely
She barely cried and there were no after effects for her at all!

She is now 8 months old and we're still going strong

Good luck and don't be afraid to push for it.

Hi all

Fleecircus has pointed me in the direction of this discussion, as she and I both have babies who have JUST had their TT's noticed at 9 weeks old.

Can any of you tell me, apart from the pain, what other signs are there. Particually - did any of your babies have problems opening their mouths wide?

DS doesn't seem to be able to open his mouth particularly wide, and then seems to slip off the aerola and just chew on the nipple... I'm not sure if this is TT or bad latch.

Breastfeeding counsellor who noticed TT, did mention that DS might need to be retrained, but I'm not sure if this is because of TT or because we've been using nipple shields since week one - sent home from hospital with them

Thanks
Sallypoo

Hi Sallypoo and Fleacircus
ds2 was tongue-tied. At first, bfeeding was not bad but from around 5-6 weeks, it began to get more difficult. He would open his mouth ok, but when on he would shake his head like mad like he was really frustrated. He would do a lot of latching on, slipping off, latching on. He also was really farty! My boobs were getting sore.
He had the tie snipped at ?7weeks ish. He bled a little, and cried quite a bit but from the very next feed I could see an improvement and within the week he was feeding so perfectly that in retrospect probably his feeding hadn't been perfect initially. He also slept 11pm-5am within the week, but I can't promise your babies will do that!
The paed surgeon who did the snip said ds2 was quite badly affected because he couldn't lift his tongue up to the roof of his mouth, that being the more sensitive test than whether or not they can stick the tongue out.
FWIW I am also TT, and my mother said I just self-weaned at 6m, she wondered after seeing my experience with ds2 whether the TT contributed to this - bfeeding gets harder the less strong your let down (which is why they're often only picked up after the first month or so)
HTH
If you need more info, check out hunker's blog here

sallypoo - can your LO stick out his tongue? My ds didn't like to open his mouth wide, but still doesn't - we need to work some more on that - but it has got better since snip. Not sure if that's just bc he's growing though.

The first symptom I noticed was at a bf group where another baby stuck out her tongue, and I realised I'd just assumed babies couldn't do that bc ds never had. Try putting out your tongue and getting your LO to mimic you.

Also feeds were often short - eg 5-10 mins - then he'd fall asleep for a couple of mins (think he wore himself out working hard to feed inefficiently), then wake up for another quick feed, with the cycle repeating itself for hours. mw said "growth spurt" at first, but this was every day, all day.

And like 2happy's ds, he was really, really farty

Good luck getting the TT done - made a world of difference to our feeds.

Hi there,

DS can stick tongue out a bit, but I've not seen it touch the roof of his mouth. Also when he cries the tongue goes into a mild heart shape as if it is pulling...

He is very farty - cries, well screams with the force of some of them!!

We're using nipple shields and topping up with formula, but when I do drop the ns he gets frustrated as 2happy describes and he too slips off.

BTW the link is great, the article describes my experiences exactly.... gosh I do hope Wednesday's appointment goes well.

Only one more day to go....

Thanks all
Sallypoo

both my ds's have tongue tie. ds1 was never diagnosed and we gave up breastfeeding at around 4.5 because it was so painful.
thankfully ds2 was diagnosed at a few days and we had it snipped when he was 3 weeks old.

the pain is hideous, fleacircus and sallypoo, you are both doing tremendously well to still be going with bf for so long with tongue-tie.

we had the problems with slipping off. they would both latch on ok, but then keep losing it. were also both very farty. ds1 still has the heart-shaped tongue obv, as his was never snipped, but ds2 can now stick his tongue right out

the results were almost immediate after ds2 was snipped.
he slept through the procedure, teensiest bit of blood stained dribble was all we had to show for it lol

Lots of interesting posts - thank you. DD has managed to cope really well so far and is huge, but recently I've noticed that she's finding it harder to stay latched on - maybe because as her tongue's growing it's causing her more of a problem. Haven't noticed her touch the roof of her mouth with her tongue; she tries to stick it out but it doesn't get further than her lower lip. I feel really stupid because I noticed when she was first born that the frenulum under her tongue seemed prominent but immediately put it out of my head. No point looking backwards, I know, but can't help thinking what if.

Still waiting to hear if they can fit us in this Thursday; probably wont find out for definite until tomorrow. Good luck tomorrow Sallypoo, I really hope this solves your BF problems. Let me know how the snip goes; I've found it so reassuring to read positive posts here, I hope it's as straightforward for you.

Hi there,

Well we're back from Addenbrookes and our appointment with Mr Samuals.

I am pleased to say that he did the snip without any need for persuasion - it was very quick and although DS did cry he was soon feeding and seemingly had forgotten all about it.

We've done one proper feed since and things do seem better, I can feel his tongue now, and he has managed to get some of my areola into his mouth. Because we've been using nipple shields since day 5 (as advised) I think it will take a few days to 'retrain' DS to open his mouth etc... but yes, definite progress.

Thank you all for all your support, and good luck Fleacircus - for the time it took to do the procedure it's got to be worth a try.... after 10 weeks of perseverance.

Spread the word ladies, if we can stop one mum and baby going through this it will be worth it!

I'll drop another message early next week to tell you how we're progressing.

Sallypoo

great news sallypoo took a few days for my ds to really get to grips with his newly freed tongue - think he was a little sore the day after as he would cry a little trying to latch on. but passed by next day and feeding (and condition of my nipples) continued to improve each day