Tell me about tongue tie please

[Haahoooo]

Sorry if this is a bit long..

DD has tongue tie diagnosed and snipped within a week of being born. Before the procedure I had cracked nipples, after it feeding was much more comfortable.

When DS was born I asked the paediatrician to check for tongue tie but he was sceptical of its existence in general. Community midwife did check DS subsequently but said all seemed fine.

Still struggling with cracked nipples now at 9 weeks. Saw a lactation consultant last week who suggested some helpful different positions, but also said it looked a bit like DS might be tongue tied.

Going to GP with him this week anyway and want to get it checked. But want to be as well-informed as possible particularly given paediatrician's comment.

So is it possible for my DS to be tongue tied in spite of relatively successful bf with good weight gain for 9 weeks, with the only symptom being my sore / cracked nipples? And if so is snipping the best answer or should I try and make things work with different positioning, which does seem to help?

Thank you for reading!

Yes it's definitely possible especially if it's a posterior tongue tie.

DD had posterior TT and her weight gain was fine (but it jumped a lot after tt was snipped, so with hindsight it wasn't as good as it could have been). Feeding was ok but became more and more difficult as she got older and wanted more milk. Also difficult whenever she was tired. Snipping at 16 weeks made a huge difference (not immediately but within 10 or so days).

Having a tongue tie left unsnipped can (doesn't always but can) cause other problems later down the line (see mawbroon's posts about her DS) whereas I am not aware of snipping causing any problems other than, occasionally, reluctance to feed for a day or two while they relearn. So I'd definitely say get it cut.

at your paed's comment. The NHS is unfortunately notoriously bad about spotting/treating tongue ties and paeds like yours are not helping. Hopefully your GP will be more enlightened. If not, are you in a position to get it cut privately?

PS your GP is unlikely to be able to spot/diagnose tongue tie - most GPs aren't trained - so I would focus on the fact that a trained lactation consultant has spotted it. Hopefully GP will refer you based on that.

Thank you very much minipie. Would you mind describing how you and your DD found the snipping at 16 weeks? I'm so nervous that DS, having become used to his tongue as it is for 9/10 weeks, will struggle to feed and be very upset. My DD was so much younger when it was done.

The GP we are seeing is generally lovely and sympathetic. This will be as part of DS's 8 week check though so I hope there will be time to discuss this. I also want to ask her about DS being very sleepy between feeds,but reading on the internet a bit, if he does have tongue tie that could be related if feeding is very exhausting for him.

Honestly in our case it was no issue at all. I had been warned by our LC that they sometimes take a while to relearn post-snip, and it can cause issues in the meantime, so I was nervous, but it didn't happen to us. She fed normally. It did take a while for her technique to improve - about 7-10 days I think - but there was never any issue of her refusing to feed or being upset about feeding etc.

I have read a few stories on here about babies who do get upset about feeding for day or so after the snip but I don't think it's common and it is temporary.

Yes DD certainly found feeding with TT very tiring. She generally fed better when she'd just slept (so morning, middle of the night or straight after a nap). For a long time she would fall asleep half way through a feed, but she was premature so I put it down to that (didn't know about the TT then...)

Oh, I didn't talk about the actual snip sorry! It was all over in seconds. DD did cry loudly when she had the cut, and had a bit of blood in her mouth. I put her straight to the breast and she fed fine and calmed down. Basically it was a lot like vaccinations.

It is certainly my experience that a baby can be gaining very well and still have tt. Ds was born 9lb and gained very well - but I was in agony and he used to feed 2 hourly then sleep in between - which could have been tt related, I never thought about that. Anyway, his tt was picked up at birth but they weren't keen to snip and we ended up having it done privately at 4weeks. He was almost 100% tt apparently. The snip itself I don't recall being that distressing but unfortunately feeding pain didn't really improve until 11wks or so when his mouth grew.

Dd was cleared for tt at birth by the mw. I flagged it up on day 4, a different mw declared it 'mild'. We were urgently referred at 4wks after an LC at a bf drop in diagnosed fairly significant tt. She was also gaining well and this time I had little pain. But I was concerned about other tt indicators. We had it snipped at 5wks on the NHS. Unfortunately dd found it very distressing and it bled quite a bit. She did feed after calming down, but then was very upset that evening and struggled to feed (it obviously hurt to suckle) which was difficult for us to watch. All fine the next day though, and apart from a small bleed a few days later, she seems fine now. However, we're not convinced it was cut enough and have an appt for reassessment this week.

Sorry about the essay! HTH, and hope your LO gets seen quickly.

Thank you again minipie and thank you misty.

It sounds like it will be the right thing to do to get this sorted, although it may be distressing in the short term. I also read somewhere that we are quite close to the cut-off age after which general anaesthetic is recommended, and clearly want to avoid that.

So my plan is to see the GP this week, but then probably get an appointment privately soon thereafter.

I'm pretty sure the cut off is six months for general anaesthetic, so you've got a while yet. Hope it gets sorted :)

Yep I 've also heard 6 months for GA. However even before that point, I presume the procedure must get progressively more of a big deal as they get older (because they grow more and also because their feeding style gets more established?) so there is advantage in getting it done earlier.

Please believe me when I say that most HCPs do not know about tongue tie. You need to find somebody who has taken a specialist interest.

Ask to join one of the tongue tie support groups on Facebook to find out who is nearest to you that knows what they are doing.

As minipie mentioned, DS1 went undiagnosed until he was 6yo and had a whole heap of problems, affecting his whole body, and the underlying cause was his tongue tie and high palate.

If I had his baby days over again, I would not hesitate to go straight to one of the dentists who are doing laser revision.

Mawbroon I'm sorry to hear that your DS had so many issues. I hope he is ok now. I am very annoyed with the paediatrician who said he didn't believe in tongue tie - it's one thing not to be specialised in diagnosing it but just odd to deny the existence of a recognised medical condition!

I went to the GP with DS this morning and am a little uncertain now. She was really sympathetic, not dismissive it all, did check DS mouth but then said she didn't think he had tongue tie. So what to do now? I don't want to put DS through something he doesn't need. I'm tempted to see the lactation consultant again tomorrow for a second (or actually about fifth) opinion on the matter....

Does anyone know if there is a risk that a tongue tie division takes place unnecessarily? The term suggests that if there is no tongue tie then there should be nothing to divide so this can't happen, but I'm not sure.

Whoever does the procedure should check thoroughly beforehand whether there is anything to cut. And they'd actually be trained to assess and diagnose too. This time tongue tie was missed by two midwives and declared mild by another. The surgeon said it was tight and significant. I wouldn't go by what your doctor said either. When I asked mine to check at the 8wk appt he said "well, what do you think? You see her everyday" !! Helpful. Not.

Do any breastfeeding support groups in your area have lactation consultants? Or ask to be referred to the tongue tie clinic on the nhs, through your health visitor?

I'm trying to find out whether laser cutting is much better than scissors...

Oh, and we've had the same frustration - just to get someone to assess it again has involved being seen as though we were getting it cut! Seems there's a real lack of skilled medical professionals who could just assess only, then refer on if necessary. A sort of triage service. Would be much more efficient use of precious resources in my opinion.

Thanks misty! Has your DD had the reassessment yet by the way? I hope feeding is going ok for you atm.

I went to our local NCT breast feeding group this morning and a lactation consultant examined DS. No obvious tongue tie apparently, although a bit of restriction at the back of the mouth which we could get a specialist to look at. She did however also comment on DS's lower jaw which is kind of recessed - like a big dimple underneath his bottom lip. I had noticed this but not associated it with feeding issues.

She mentioned cranial osteopathy but I'm not sure - don't know anything about it....

No tongue tie, but a bit of restriction at the back of the mouth?

What does that mean??

I'm not sure to be honest actually. I think she must have meant that there may be a posterior tongue tie but that she wasn't specialised enough to diagnose it.

There is one lady locally who many people have recommended - she is a tongue tie specialist - but works privately so will have to see if I can book a consultation.

Ironically feeding has been a bit less painful the last few days

We had it today - and got the all clear :) so relieved its all over.

I agree, what does restriction at the back of the mouth mean??! Glad the pain has improved for you. Strangely, apart from agony the first few days, I've not had painful feeding this time. We were more worried about the impact on weight gain and weaning, hence getting it sorted. She was also very refluxy before getting it snipped. Much better since.

Hope you get some better advice. It's so frustrating when all you want is a straight answer isn't it :(

Such good news misty! Really pleased your DD is now fine.

Yes, it's exceptionally frustrating to be given so much conflicting advice. I guess DS is not a straightforward case of anything. I have now heard about a clinic where you can see a tongue tie specialist, osteopath and other experts all in the same room. It's quite far from me I think but may be worth the journey.