Lip Tie

[CrazyDogLady]

Hello ladies,

I’m wondering if anyone has any experiences with lip ties?

I came across an article / forum post about these by chance a few days ago and it struck a chord with me. I checked LO and sure enough, he looks to have a pretty severe lip tie (it reaches down to his gum and on to the top palate).

After a bit of research, it turns out LO has pretty much all of the symptoms of a lip tie: fussy at the boob, latching on and off during feeding, very gassy, colicky, never seems satisfied after a feed (often crying during and after feeding), poor weight gain (started off in 75th percentile and is now just under 25th at 9 weeks old). I have also been experiencing sharp pains in my breasts after feeding, sometimes for hours after.

LO had his 8 week check and immunisations yesterday so I mentioned his possible lip tie to the GP. She pretty much dismissed it and said only tongue ties affect feeding, not lip ties. I was expecting this reaction as I’m aware that lip ties are not very well recognised in the UK (and I’ve found this GP dismissive in the past). I then mentioned to the HV who, though had never heard of a lip tie, took me a bit more seriously. She has arranged a visit with a breastfeeding support worker. We saw one of these in the early weeks too and they weren’t much use, but this will be a different person so I thought it couldn’t hurt. She is also going to refer us to the orthodontist they usually refer tongue ties to.

I’m not holding out much hope for the referral to be honest, but if we don’t get anywhere I plan on phoning round a few places who deal with tongue ties relatively locally to see if they have any experience with lip ties. I believe Ninewells, Edinburgh Sick Kids, Glasgow Southern General and a Private hospital in Edinburgh deal with them.

Anyway, sorry for the long post, and thank you for reading this far. I guess I just wanted to ‘talk’ about this with someone other than OH. He’s very supportive, but I think he’s worried that I’m pinning all my hopes on this solving everything, which there is a danger of to be honest. But I also feel like I need to try and get this looked in to, I would hate to think that his feeding / weight could be affected, not to mention possible future issues with teeth or speech, just because I wasn’t brave enough to push it further.

Your experiences / opinions would be appreciated.

 

[MrsE26june]

I attended a tongue tie clinic in Yorkhill in Glasgow yesterday. Not sure if they deal with lip ties but you could check. The infant feeding advisor was Debbie Barnett and the telephone number on their leaflet is 0141 232 4006. Hope that might help you.

 

[Maxy1]

OMG - getting DS's lip tie lasered was the best thing we ever did. It helped feeding so so so much.

I was so ill from BFing DS with the lip tie. I had chronic mastitis for the whole first year until we got it lasered. I lost a nipple because DS couldn't latch so was holding on to feed with his jaw. When his teeth came through there was a big gap in the middle. It closed when we got it lasered. We had a specialist dentist do the lasering.

Because of how sick I was I was seeing LC's every other week, GP and ended up in hospital on IV antibiotics and nobody picked it up. It was really just that I had a great LC who was determined to find out what the problem was rather than treat the symptoms. She was awesome, spent lots of time researching it for me and getting me a referral.

I really recommend that you get it lasered if you can. It heals much quicker and you have less work to do while it is healing. But at the end of the day, get it fixed. It will make a difference.

 

[supertabby]

If there's a lip tie (certainly sounds like it from the description) then there's almost certainly a tongue tie as well.

My DS had a tongue tie that was clipped at 2 days old (he's now 6 weeks) - he'd already caused loads of bruising and bleeding to my nipples in just that short time but his latch was immediately improved and I became much more comfortable. It wasn't perfect however and looking into things I learnt about lip ties and realised DS has one.

Fortunately DS is currently gaining weight well, but I have a fast flow and everything I've researched suggests that a fast flow could compensate for poor latching in early weeks but eventually his weight andmy supply will start to suffer. I'm also worried about long term issues like teeth decay, speech etc and tbh while I'm not in agony sometimes my nipples are sore.

I saw a lactation consultant who confirmed the lip tie last week but she can't refer me. I saw the GP today who didn't know where to refer it so I've left it with him. He did say though that he didn't think anyone would do much given he's gaining weight.

It sounds like the nhs really don't do much at all about lip tie I've heard there's nhs places in Huddersfield, Southampton and London and that's it. However I spoke to another mum at a bf support group who got her older son's done recently at Manchester (which is our nearest) but I read online yesterday that they don't do it anymore.

I believe now that an undiagnosed tongue tie and lip tie may have been what made breastfeeding so hard with my DD who's now nearly 3. We battled poor latch for 3 months before she gave up herself and went on nursing strike. It was absolute agony for me too. I think an accident at 18 months tore her lip tie as there was loads of blood and she's got a gap between her teeth.

There's a great Facebook group for tongue and lip tie - Tongue Tie Babies Support Group. Also google Dr Kotlow for his website and blog, he's considered a leader in tongue and lip tie research and treatment (unfortunately his practice is in the states).

 

[CrazyDogLady]

Thanks for your replies ladies, it’s comforting to know I’m not alone!

MrsE26June – thank you so much for the info, I will add Yorkhill to the list I’ll be contacting. Hope your LO got their tongue tie sorted.

Maxy1 - Sorry to hear you had such a rough time, but glad that you managed to get it sorted and it made such a difference. Reading your experience helps convince me that I’m not making a fuss over nothing. Can I ask where you went to get the lip tie divided? I would definitely rather get it lasered, otherwise LO may need a general which I’m not so keen on!

Supertabby – I had read about tongue ties and lip ties being related. I've tried to check and LO definitely doesn't have an obvious tongue tie, but I can't tell if he has a posterior tie.

Great that your LO's TT got spotted and sorted so soon. I agree that it seems the NHS won't do anything about lip ties, I think a big part of it is that nobody knows anything about them!

I'm the same as you in that I'm not in agony, but there is definitely pain there which makes me think that something is not right.

I actually got a phone call this morning asking us to go this afternoon to the community dental clinic at the hospital. We were there for all of 5 minutes while someone checked LO's mouth. The dentist said he didn't look like he had a tongue tie (I'm not convinced he knew how to look for a posterior tie though) and said that he doubted the 'prominent frenulum' (he refused to call it a lip tie!) would cause problems with feeding.

Again, this was kind of expected, but he did say it would be better for the paediatric surgeon to have a look as he has more experience. We're going to see them tomorrow.

I'm glad things are moving along quickly (unexpected for the NHS!) because at least if nothing comes of it we haven't wasted weeks waiting before exploring other avenues.

Thanks again

 

[Maxy1]

Hope your appt with the paed went well. DS did not have TT, just the lip tie.

Unfortunately, I am in NZ so can't recommend a place for you to call about lasering. Our LC organised the whole thing, they searched for a dentist who had the right laser and booked him out for a few days, putting all their lip tie clients through there. It was just at a dentists office and they had the laser for other things. I only live in a small town (comparatively to England/US) and there were two dentists with the equipment locally, so I would expect for dentist's to have the same laser somewhere near you.

The treatment was not covered by public health and we were slack and didn't have private for DS at that stage, so we just paid for it.

 

[sept2010]

Im suspecting my 3 week old of something like this...
She keeps losing suction at the breast after she first latches on with a mouth full of breast...which means she slowly slips off to just above my nipple and they are really sore. I also have sharp pains in my breast after feeding..
She seems to be gaining and plenty of wet n dirty nappies.

How would i go about getting lo checked out? Im in the UK by the way..