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Children's health

Anyone had a baby with tongue tie recently?

42 replies

AddictedtoGreys · 12/09/2016 18:48

My DD is 10 days old and has tongue tie. I am EBF but it is causing problems with the latch and even though now gaining weight, still hasn't reached her birth weight. It is painful for me to feed but I am persevering with the hope of getting it treated. However, after seeing our GP today who said he would refer her, had just called me to say they no longer snip tongue tie as it can cause a scar which causes more problems than the original tongue tie. Has anyone heard of this? He said as long as she is feeding they would leave it alone until she is a few years old. But she would then need a general anaesthetic which I am not happy with really. And what about the pain it is causing me? Anyone else been in this situation?

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FreeButtonBee · 12/09/2016 18:55

Find a private Lactation consultant. I had my DD snipped at home on day 3 and it made a massive difference. I used Ann Dobson if you're in the south east then she will get to you although she is very busy. Milk matters have a website.

All 3 of my children were TT and all snipped by Ann - no issues at all since and fed all of them to 1yo (and DS2 beyond)

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AddictedtoGreys · 12/09/2016 19:52

Thank you free , my GP made me feel like I would cause DD problems by getting it done. But I want to keep feeding her and don't see any other way through it.

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ImYourMama · 12/09/2016 19:57

I'm astounded that your GP won't refer you. Being able to feed comfortably is hugely important! I'd ask for a second opinion or look privately for a lactation consultant

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AddictedtoGreys · 12/09/2016 19:58

Apparently he tried to refer me, but on doing so got told that they no longer do anything about them unless it's causing the baby a problem. I would much rather DD have it resolved now, and feed her comfortably and her feed well, than have to put her under GA in a couple of years.

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BendydickCuminsnatch · 12/09/2016 19:59

DS had a very severe tongue tie, annoyingly missed for 8 weeks Angry despite it being so bad. By that time we'd moved area so had to have it snipped privately, was quick as a wink and so glad we did it. Poor baby. He could finally get a nice big feed! Definitely find someone to do it for you, if you're near by there are some great ladies in Sutton, Surrey who I recommend. It was £140 but can't imagine leaving DS in the state he was in!

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RumAppleGinger · 12/09/2016 20:00

My DS's was 6 days old when his was snipped (although it was almost 6 years ago). It was actually done at a near by dentist surgery but I can remember the role of the woman who did it. I was referred by my midwife rather than my GP. It helped massively with breast feeding, which at the time I was all but ready to stop. Hope you get it sorted.

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MollyBloomYes · 12/09/2016 20:07

But it is causing your baby a problem, she's not feeding effectively! How enormously frustrating! My dc's both have/had tt. Dc1 went undetected and I finally stopped feeding at just shy of six months as I couldn't bear it anymore. As there were no problems picked up I thought that was as good as breastfeeding got.
Dc2 did have his cut and the transformation was amazing. I now 'get' how easy and lovely breastfeeding is. Nine months down the line I'm nowhere near giving up! It really is worth doing from my experience and I'm so cross on your behalf that your NHS trust don't seem to think it's causing any problems!

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JE678 · 12/09/2016 20:09

We had DS' snipped on the NHS at a local hospital 6 months ago.

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Blimeygirl · 12/09/2016 20:20

We had our son's done when he was 10 days old. Midwives said he didn't have a tongue tie but he was having trouble latching. We spoke to a lactation consultant who said trust your instinct so we went back to the midwives who had a tick list. We only ticked one box which was pain on feeding (which could have been getting used to feeding but I didn't think so) so the midwife didn't want to refer. We pushed for it. When we got to the tongue tie clinic they said he had a really far back but very thick tongue tie. This meant that normal hops couldn't see it. They snipped it there and then and the difference was incredible!
Had they not snipped it we would have gone private.

Excuse the essay but I'm pretty passionate about getting tongue ties snipped as it has meant the continuation of breastfeeding, plus excluding any future problems with speech or ice cream licking!

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Blimeygirl · 12/09/2016 20:22

Where abouts are you as someone may be able to help with a recommendation for someone to help?

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AddictedtoGreys · 12/09/2016 21:15

I am in South Wales. I am going to call my midwife tomorrow and see if there is anything else I can do through them or if I will just have to go privately. Thank you for your responses

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BendydickCuminsnatch · 13/09/2016 06:47

Good luck Addicted! You know best, honestly. I knew something was up but kept being told he was fine (I had no pain but he took 4 weeks to get back to birth weight). By the time he was diagnosed he'd gone from 75th centile weight to 2nd centile and a failure to thrive, my supply was shot, we were already combo feeding and ended up switching to full formula at 4 months. Don't meant to scare you but do push for help :)

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grafia123 · 13/09/2016 09:21

Good luck. I to Nhs and private and was told it was not causing ds problems. They said the feeding problems were not caused by the tongue tie. Ds is now 8 and still has the tongue tie.I don't understand how some people can get their baby's tongue tie snipped without a problem and for others it is very difficult. Good luck, I hope you find someone to help.

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Clickclickclick · 13/09/2016 09:28

I think they should check for TT at birth and snip it there and then. I got my ds2's tt snipped when he was 4 weeks old after fighting with every health professional I came in contact with. He was a clicky feeder, latch was so painful but he was putting on weight so no one wanted to do anything.

After a lot of digging around I found out there was a Dr who deals with tt locally so I called his secretary and she told us to bring ds over. He took one look and said he had an obvious tongue and lip tie and he snipped the tongue tie there and then. Ds didn't even wake up and feeding immediately got better.

If you're in Northants, look up Dr Lee in Kettering.

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AddictedtoGreys · 13/09/2016 09:55

Seems a lot of people are having the same problem as me - if baby is feeding then they won't do anything. But what about the pain it's causing me? I don't want to bottle feed, but I can't carry on with this pain forever either Angry

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29redshoes · 13/09/2016 10:01

Sorry to hijack, but how do you know for sure if a baby has tongue tie? My DD had loads of problems latching at the beginning, I had lots of pain, lipstick shaped nipples etc. She'd feed for hours but not gain weight. She's always been a very sicky baby, it doesn't cause her any distress but does mean a lot of washing Grin

My HV was convinced she had tongue tie, the midwife said she didn't. Nobody ever looked inside her mouth for more than about three seconds! And she can definitely stick her tongue out, although I've never seen her lift it to the top of her mouth.

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29redshoes · 13/09/2016 10:02

Oh and I've switched to bottles now, I got fed up of it! So maybe it doesn't matter anymore anyway.

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felineways · 13/09/2016 10:03

I had a similar situtation my son had a tight tongue tie and poor latch. But I had a huge milk supply and he was gaining weight well. However each feed was like a cluster (took 5-6 hrs) i hurt, he screamed.

It cost £70 to get it done privately and improved things rapidly. Not heard of scarring issue but there a wonderful facebook group for parents for babies with tongue / lip tie might be worth asking there?

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JellyWitch · 13/09/2016 10:08

Go and see a lactation consultant who specialises in TT. Most GPS don't have a clue about this. No decent practitioner will divide it unless necessary but will do a proper assessment of tongue mobility.

In my experience, of 2 TT babies, you can muddle through but it can affect your long term supply and in my case it went really wrong around 6 weeks when my supply settled. With the second child I booked the LC without hours of her birth

It's also worth looking up different nursing positions. A laid back or "biological nurturing" position can help a TT baby stay latched and minimise damage so might help until you can be seen.

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PettyCury · 13/09/2016 10:12

I have an untreated severe tongue tie. My son had a severe tongue tie that we had cut privately when he was 5 days old (first day out of hospital). It was so obvious that the midwife told us he had a tongue tie minutes after he was born, before he'd even been weighed! We had to go private as we were told the nhs wait list was 6 weeks, which was unacceptable when he was mangling my nipples.

Anyway... I'd definitely say get it done when they're young. It can effect eating, speech and kissing later in life too. Avoid the general anaesthetic while you can. Ours cost £120. Worth it!

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Believeitornot · 13/09/2016 10:12

I had massive feeding problems because of dds tongue tie. However when I saw BF counsellors and the GP they seemed to suggest I was holding her incorrectly or latching on wrong.
She was my second.

Anyway it was after night of her waking every 20 mins, of never settling after feeds and always being so miserable (hungry I suspect), taking down loads of air etc that the MN lot helped me see that it was tongue tie.

I got a lactation consultant who specialises in tongue tie who diagnosed an 80% tie (?) within minutes and snipped dd shortly after. She was 11 weeks. As soon as she fed after the snip it felt so so much better and right.

It's hard when you're tired to fight your corner but if you know she has tongue tie then push for a snip.

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Believeitornot · 13/09/2016 10:13

Oh and we've never had issues with the scar. Dd is nearly 5!

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29redshoes · 13/09/2016 10:15

believe could your DD stick her tongue out? Mine can, does that mean she doesn't have tongue tie?

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Batteriesallgone · 13/09/2016 10:17

I think - only think though - that snipping it can cause issues with the scar for a bottle fed baby. Because the tongue doesn't move in the same way bottle feeding. Breast feeding the tongue stretches to feed so a scar doesn't really form. So tongue tie revision isn't done automatically and in high bottle feeding areas trusts can be quite reluctant to do it because they see it causing problems.

However, if you are breastfeeding and intending to carry on breastfeeding after getting it snipped there shouldn't be any problems. Sounds like your GP may have the wrong end of the stick. Push for a referral - you shouldn't have to suffer pain whilst feeding.

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Believeitornot · 13/09/2016 10:19

She could only stick it out a tiny bit. Literally just over her gums. She had that heart shaped tongue - with a kind of dent at the end.

After she was born, the paediatrician said she had a mild tie. Subsequent health care professionals and BF counsellors said no tie... So I was left thinking it was no tie!
But I came to MN and described her symptoms after yet another bad night and there was a very knowledgeable poster who said it sounded like a tie so that's what made me find a specialist.

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