Baby with tongue tie - any experiences?

[Sparkeleigh]

My baby has been diagnosed with a tongue tie. He wouldn't bf at all on hospital unless the midwives squished my boob and shoved him into it and they were concerned about him not feeding so eventually I gave him formula to get home.

Since then my milk has come in and I've been expressing. I saw a Lll leader yesterday who diagnosed tongue tie, and said clipping it could improve how he feeds.

Does anyone have experience with a baby with tongue tie and did you get it clipped?

My DH feels that if it's just to make our lives easier and get more sleep it's a bit selfish to put him through it. He's been feeding and changing DS at night while I express but I'm worried at how practical this will be when his paternity leave is over.

I don't know what to do, it seems easier to do it now when he's only a week old than later and I'd really like to breastfeed him, even if that is a bit selfish. I've tried nipple shields and he seems to be able to feed through those but they're so fiddly and need constantly sterilised they're not practical for all feeds.

Thanks to anyone who read that essay!

Oh God. Lactation consultant diagnosed my DS with slight tongue tie. She said on balance, it wouldn't be necessary to refer him, as he was feeding OK (after a lot of hard work to improve his latch). His tongue is definitely a bit crooked and pulls to one side. Do you think I should get him re-diagnosed on the basis that it might affect his speech later?

I have just realised that my DS has a very marked upper lip tie. I am at a loss as to how to proceed, I would like to have it sorted whilst he is a baby but I am in Wales and cannot see anyone who may be know about this anywhere near us.

Humphrey, we travelled a 400mile round trip to have ds1 revised.

A good frenectomy is worth travelling for.

DS was diagnosed with a posterior tongue tie at 5 weeks and had it snipped by a lactation consultant in London. She checked a couple of weeks' later and said there was no longer a problem. At the time, I said that I thought DS had a tongue tie and she said that "tongue ties are a fad" and didn't check. At the same time I spent a fortune on follow-ups, cranial osteopathy and a "support group" (which was just a way to get an extra £10 out of you while you waited to see the lactation consultant!). I probably spent about £350 at the time.

I then had the hardest seven months of my life! DS still wasn't able to latch on properly so breastfeeding was incredibly painful. I cried most times he fed. He gulped a lot of air when he ate so always threw up most of the feed within ten minutes. So we were feeding and cleaning him up about once an hour.

I kept asking for help - GP, private lactation consultants, nurses, midwives. Everyone said that DS was healthy so there wasn't a problem! I was misdiagnosed with thrush and they told me to use nipple cream, which made sod all difference. I had bruises around my nipples from where he gripped on with his gums.

DS couldn't use a bottle as he couldn't make a seal with his mouth so I had no choice but to continue breastfeeding. The only way I could do it was by taking nurofen regularly and gritting my teeth.

I muddled on until DS got his lower teeth. Then it got worse, as when he latched on his teeth cut into my nipple so I had two sore holes on the underside that he couldn't help but bite into each time. DS could see that he was hurting me and it really upset me as I could see him watching me as he latched on as gently as he could.

That's when I decided enough was enough and made an appointment with Dr Levenkind in London. To cut a long story short, DS still had a tongue tie and a lip tie. The procedure was awful for both DS and us, and there were a lot of tears for the two weeks of follow-up stretches.

But now at 9 months everything is absolutely fine and pain free. My nipples have completely healed and DS no longer throws up 10 times a day. Both of us are a lot happier.

So, don't give up and do get it sorted by someone who knows what they're doing.

BTW, I was able to get part of Dr Levenkind's fees back from my Simplyhealth insurance, whereas they don't cover lactation consultants.

Hello

Both my DSs had tongue tie and were both snipped at 3 weeks, my eldest didn't even wake up! Made a HUGE difference to breastfeeding, I was really grateful to the midwife who suggested we had it done - the doctor on the ward said it wouldn't cause any probs but it was agony feeding. It's a shame it's not a standard thing to check for and sort out as early as possible.

I would recommend also getting him checked for lip tie. Ime this often goes hand in hand with tt. Ds had his ptt cut at 15 days but it made not a jot of difference. It is only now that I realise I should probably have had his lip tie revised as he just wasn't able to purse his mouth properly causing lots of damage and pain to my nipples.

Oh and re lp tie revision, thee a couple of places (dental) that do a laser treatment for it so it's minimally invasive

Mr Patrick Sheehan is the go-to guy in Manchester (which depending on where you are in Wales Humphrey might be a not-too-ridiculous trip).

mawbroon I am happy to travel to get it done (I actually bookmarked the very helpful link to the Finchley Dentist you made on the other thread!), I just want someone who can confirm he has an upper lip tie from a position of knowledge. My google searches don't seem that definite a diagnosis esp as feeding is going well except for the air swallowing.

Humphrey, it would be worth contacting Dr Levinkind, he was very helpful when I emailed about ds2.

Your other option for lip tie is John Roberts at the Cote Royd Dental Practice in Huddersfield. Last I heard though, he was only doing under 1s and over 6s.

There is a good group on facebook called Tongue Tie Babies Support Group. There is a load of knowledge and experience on there! Just ask to join

thank you so much mawbroon - this is all immensely helpful

For what it's worth my lactation consultant and the LC who eventually separated ds's posterior tie recommended dr levekind for lip tie.

I just want to add that in most cases of lip tie, there is also a tongue tie - usually posterior. Sure, there will be some out there with a lip tie and no tongue tie, but not many!

We had our son's tongue tie snipped at four weeks, having been told at the time of his birth that it was a very mild one and unlikely to cause problems. The Dr who snipped the tie said that it was actually pretty severe, and I know myself that breast feeding never really worked for us because we waited so long to address the problem.

One health visitor we saw held the view that every child should be able to lick an ice cream, and she helped speed up our appointment. I would do it again in a heartbeat.

Forgot to say - the procedure didn't upset him one bit. It was very fast and he immediately latched on for a feed afterwards. At the time I remember being anxious, but actually it really was no big deal.

Regarding the lip tie - thanks. The Lll leader checked for this at the time and said he had a mild one that she didn't think would affect feeding so I wasn't too worried about it, but I'll be sure to ask the breastfeeding coordinator about it when we go. No word on an appointment time yet but I'm hoping to hear tomorrow.

I've had to give up on nipple shields for the minute, it was fine when the breastfeeding midwife was here and helping me position him correctly but since then it's gone downhill and one of my nipples is blistered and his nappies changed so I think he wasn't getting enough. I swear the pain is worse than actually giving birth to him.

DS is very windy after feeds and if we're not careful to wind him properly he'll end up spewing up what looks like all he's had so that's miserable for him, I'm wondering now if it's linked to tt or if it's just a baby thing... He's my first so I'm picking it up as I go along!

Regarding the lip tie - thanks. The Lll leader checked for this at the time and said he had a mild one that she didn't think would affect feeding so I wasn't too worried about it, but I'll be sure to ask the breastfeeding coordinator about it when we go. No word on an appointment time yet but I'm hoping to hear tomorrow.

I've had to give up on nipple shields for the minute, it was fine when the breastfeeding midwife was here and helping me position him correctly but since then it's gone downhill and one of my nipples is blistered and his nappies changed so I think he wasn't getting enough. I swear the pain is worse than actually giving birth to him.

DS is very windy after feeds and if we're not careful to wind him properly he'll end up spewing up what looks like all he's had so that's miserable for him, I'm wondering now if it's linked to tt or if it's just a baby thing... He's my first so I'm picking it up as I go along!

Yep, I described bf as worse than labour before tie divided.
SOunds like your going the right way about it - go and find out the info.
MW said DS1 was mild, pead asked if she could go get a colleague to show as it was "really unusual".

There was a campaign somewhere to get tt diagnosed at birth, and have sufficient midwives trained in each hospital so any tie could be snipped before discharge. Loads of support, but can't remember who set it up. Will have a look.

Sparkeleigh a slight tt can have a huge impact, you can't assess tongue function by the degree of tt so it is very likely a tt is causing you problems.

Sorry didn't read properly!

Lip ties, hmmm speak to your normal dentist too. Can a lip tie cause problems? Yup.
Are they very common in babies who bf perfectly well? Yup.
Is there sufficient research in this area? No.
Should there be more? Yup.
Do private practitioners make claim that are anecdotal rather than backed by recognised research whilst charging plenty? Hmmm, maybe...

I am SO fed up with the way people airily tell bf mothers a slight tie isn't problematic.

DS had a very severe tie so nobody said that to begin with, but after the second division at 4 months they began to. Then the bf clinic at the John Radcliffe actually looked at the nipple shape after a feed they helped latch for, and the tell-tale lipstick shape was still there. They then examined his mouth in detail and found his tongue's growth had been restricted through lack of use - he was actually tied through the tongue itself. They said eating solids would hopefully fix it. When he started eating, he couldn't use his tongue and had to pull food clear with his fingers - then at about 10 months he began to eat normally, and by a year could poke his tongue out. Fully mobile now - as though he'd never had a problem. But it took serious expertise to identify an issue remained, as the frenulum was cut.

If bf is agony then a tie is probably to blame. Just as very tt babies can sometimes feed normally. The expert on the issue is the woman whose nipples are being lacerated. Speaking as someone else who did not need pain relief in labour other than gas and air despite birthing a large baby and sustaining tears that needed stitches, but did to breastfeed.

If it hurts, it's a problem. If the baby can't latch, it's a problem. That should be the diagnostic criteria for feeding, though obviously speech/teeth/sexual function might be different - don't know.

Hello. I really feel for you. It's not selfish of you to want to have it snipped now. It's better to get it done the earliest you can.

We had the same problem with DD and before she had the snip at two weeks, I did what you are having to do - constant expressing and using nipple shields. It was a massive faff and exhausting.

I'm not going to lie - taking DD for her little 'operation' was scary (for me) and ever so slightly heart breaking but it was over within seconds, she barely cried about it. And it cured the problem.

We had to do some massage of the wound of the weeks afterwards which was a bit of a faff and not very nice for her. But it's essential to prevent the tongue tie from reforming.

After the snip, breastfeeding almost immediately became easy and lovely, rather than painful and demoralising. She is now 19 months and still happily feeding! No regrets here. Good luck. I hope you get it sorted.

Thanks, sorry, I wasn't very clear, he has a lip tie as well as a tongue tie. The lll leader didn't think the lip tie was severe enough to affect feeding, but that the tongue tie is probably responsible. I'll definitely mention it to my dentist too.

It really is great to hear all the experiences, thank you

Sparkeleigh I totally understand what you mean about the severity of the pain. It is agony. I would be doubled over in tears during feeds and dreaded every single feed time. My nipples were blistered and bleeding like yours. I would have given up on breastfeeding if I'd had to carry on one more day. Having it snipped changed everything for both of us. I really hope you get it sorted.