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I've just noticed that my 9mo has lip tie, any experience?

(31 Posts)
ColdTeaAgain Tue 25-Feb-14 15:52:57

Had a very difficult start to breastfeeding, was agony for weeks and weeks. MW checked for tongue-tie at the time and said it was fine and that I just had delicate skin and it would get better. Which it did. Baby is now nearly 9months and have had no probs with feeding since about 2.5 months old.

But something, don't know what, made me think of lip tie today and I just looked and think she has it. It would explain the difficulty feeding in the early days. Why didn't I get a second opinion at the start?

I'm now panicking as she's starting teething and I'm worried about it affecting her top teeth. I'm kicking myself for not noticing sooner sad

What do I do? GP? Is it going to be horrible for her having it snipped? I feel so awful sad

PonceyPeas Tue 25-Feb-14 18:08:01

No advice I'm afraid but I'm watching with interest as my 8 month old also has quite a bad lip tie (bad in my opinion anyway). She did have tongue tie when she was born which was snipped. She doesn't have any teeth yet, but I'm due her 8 month check shortly and I'm going to talk to the HV about the lip tie as like you, I'm concerned as to what it will do to her teeth

Yaya70 Tue 25-Feb-14 19:42:26

Like you, I really struggled with awful pain while breastfeeding for the first 2-3 months. I'd never even heard of lip tie but after reading your post, I looked in DS's mouth and sure enough he has a lip tie. Turns out I have one too -- I just thought that was normal.

Anyhow, he's 2.5 now and we've had no problems with teeth so far. I guess it depends where the frenulum attaches. Is it quite far down?

DS's looks a bit like the right picture on second row on this page:

HumphreyCobbler Tue 25-Feb-14 19:46:13

I am taking five month of ds to have his upper lip tie excised by laser at Dr Levinkind's practice in North London. It is a 3.5 (most severe is 4) and could possibly cause dental problems/tooth decay. He probably has a posterior tt too, but that can't be diagnosed by photo! He had an anterior tt snipped at four days old.

Not one NHS person I asked, even the lactation consultant, knew a single thing about lip tie.

mawbroon Tue 25-Feb-14 20:54:22

Pointless trying to get anywhere with NHS re lip tie IMO and IME.

Dr Levinkind is your man, or John Roberts at Cote Royd Dental Practice in Huddersfield.

Most lip ties do not occur on their own. There is usually a tongue tie to go with it, often posterior.

ColdTeaAgain Wed 26-Feb-14 10:24:55

Thankyou for the link yaya From those pictures I would say DD's looks somewhere between the first and second example so hopefully not too serious. I will check again when she wakes up.

I feel really angry about it tbh. I am certain this was the cause of all those weeks of agony and being in tears nearly every night wondering if I could go on breastfeeding another day. At the time, I discussed our bf problems with the HV, the GP and two different MW's and clearly none of them had a clue about lip tie or even much about tongue tie for that matter.

This must be one of the reasons why many women give up on breastfeeding before they want to when it could be easily avoided from what I have been reading around the subject.

I am now undecided whether to take any action as hopefully it is not bad enough to affect DD's teeth and she feeds perfectly fine now. It's a bit off putting to think that if I go the GP I will most likely get fobbed off sad

HumphreyCobbler Wed 26-Feb-14 11:28:17

My GP told me that tongue tie rarely affects breastfeeding. hmm This seems to be the received wisdom amongst HCPs.

mawbroon Wed 26-Feb-14 12:34:10

I won't bore you with DS1's story, other than to say that you should have her checked out by one of the dentists I mentioned earlier.

Ties can cause structural problems with the mouth and face which can in turn have knock on effects with breathing, ENT and orthodontic problems.

Chewing and swallowing can be difficult if the tie is very restrictive, gastric problems are linked too.

DS1's ties were undiagnosed until I figured it all out when he was around 5yo. He is 8 now and improved hugely after revision and early orthodontic treatment (brace and headgear).

I am not trying to alarm you, but if I can help anyone avoid the dreadful time that we had with DS1 then all the better. Not all ties cause the structural damage that I have described, but your mainstream hcps will not have a clue about any of this. There is WAY more to it than speech and feeding.

You can almost play tongue tie bingo as they Churn out the same myths over and over again.

lollipoppi Wed 26-Feb-14 15:07:25

My dd has upper lip tie. I noticed it when she was 4 months, unfortunately I had to give up bf long before that hmm

Hers looks like picture 7 on the link

I went to my GP and he basically had no idea what I was talking about and sent me on my way

DD is now 13mths and he too teeth have come through with a gap between them, which I'm not too concerned about however after reading the link I'm worried about teeth decay.
I have no idea if she has a posterior tie too but il check when she wakes up!

No idea what to do?

ColdTeaAgain Wed 26-Feb-14 20:19:49

Hi lollipoppi, I am at a loss as to what to do as well sad I suppose it's worth a shot going to my GP in the first instance. And then try dentist after that.

Thank you for your posts mawbroon, so sorry to hear how much your DS has had to put up with. We are a long way from the specialists you've mentioned but if it comes to it at least we have a couple of names to contact, thank you.

I have been worrying about it all day to be honest. Firstly, worrying about what to do for my DD. Secondly, worrying about the clear lack of understanding among HCP's and the subsequent problems it is causing both in breastfeeding and other issues later in childhood.

It's such a simple thing to check for, why isn't it being done routinely along with all the other checks at birth? It would take seconds! I'm so frustrated! angry

mawbroon Wed 26-Feb-14 20:48:23

We travelled a 400 mile round trip to have ds1 lasered. This was after a local surgeon failed to revise his tie properly.

I completely agree with you that routine checks should be carried out. But I think it will be a long time before HCPs are fully aware of the many and far reaching consequences of untreated tongue tie.

lollipoppi Wed 26-Feb-14 20:50:34

I've been thinking about it all day too, it's so frustrating.
After reading up on the internet even if they had spotted it at birth the chances are they wouldn't have snipped it, but like you said you could receive special help with bf, I just presumed I was not getting it right. And after weeks of toe curling torture I had to throw in the towel hmm

I don't think she has tongue tie as she has no problems sticking her tongue out at me!

TheGreatHunt Wed 26-Feb-14 21:16:32

My dd did and it made bf a nightmare. Her tongue tie was snipped but they did nothing about her lio tie despite pointing it out.

I thought about going private but left it as I thought I would wait until she is older. She actually fell off the sofa and split it a few months ago (she's 2) so the issue has gone away.

ColdTeaAgain Wed 26-Feb-14 21:20:19

So sorry you felt it was your fault you had to give up breastfeeding. I had latch and position checked many times and all I ever got was "you have fair skin, it will toughen up." Looking back I can now see what a load of rubbish that was!

Why would it probably not have been snipped? Because they don't see it as a problem or another reason?

Anyone have any tips for how to check for tongue tie? Dd can poke her tongue just past her lips but thinking about it I've never seen her stick it right out, does that even mean anything? May be getting over paranoid now! confused

mawbroon did you have to pay for the treatment privately?

TheGreatHunt Wed 26-Feb-14 21:26:03

Anyone have any tips for how to check for tongue tie? Dd can poke her tongue just past her lips but thinking about it I've never seen her stick it right out, does that even mean anything? just like my dd.

When your baby cries, have a look.

lollipoppi Wed 26-Feb-14 21:43:19

Everything I've looked at online suggests they will not snip unless you go private as it is only for cosmetic reasons like a gap in the teeth
I would have thought that potential tooth decay was slightly more concerning than just cosmetic!

also dd constantly, and I mean constantly has her mouth open. She can close her mouth, just always has it hanging open! To the point where people have pointed it out, I'm guessing that's something to do with the lip tie has anyone else LO had this?

Willdoitinaminute Wed 26-Feb-14 21:56:11

I suspect the problem with identifying tongue-tie and lip-tie in newborn infants is lack of knowledge in GPs and MW. In 27 years of dental practice I have never been asked to examine a newborn.
Perhaps new mothers should be encouraged to see their dentist who is far more likely to be able to assess the subtleties associated with this condition. A baby with a severe tongue tie will have a v shaped palate, something a medic would not think to look for and a simple scan of literature available on the internet (not Dr Google but the little known Google scholar which filters out all the less than credible sites) quickly enables someone trained to examine oral soft tissues how to assess a tongue tie.
As for lip ties, although an infant may have a thick band as demonstrated in the photos in the above link, it is how tight it binds the lip to the alveolar ridge that matters rather than merely the presence of the band.

mawbroon Wed 26-Feb-14 22:08:11

lollipop Yes, we paid for private treatment. The first one cost and arm and a leg and was done under GA. I didn't know any different at the time sad And it wasn't even bloody well done properly angry

Second revision was by laser. No anaesthetic apart from a bit of local. Done and dusted in about 5 minutes! He was eating half an hour afterwards.

Being able to stick the tongue out is neither here nor there with tongue tie diagnosis. DS1 could lift his tongue really high and could stick it out fully. It was the back of his tie that was tied down. He was unable to do the full movement required to breastfeed efficiently and it also caused tongue thrust which affects the oral structure. His mouth was always open too btw, much less so since he was revised. Mouth breathing also affects the development of the lower jaw, causing it to lengthen - sometimes called long face syndrome.

I would also say that the practitioners who are knowledgeable are saying that 90+% of lip ties that they are seeing are accompanied by a tongue tie, so there's a very high chance that she does have a tongue tie too.

THIS is how you examine for posterior tongue tie.

ColdTeaAgain Wed 26-Feb-14 22:34:25

DD has her mouth open a lot and often sleeps with it open but not all the time. I think as she is getting older, her mouth hangs open less often.

willdoit would you say I'd be better off going straight to see a dentist rather than GP? Is this something well recognised by all dentists? Or is it a specialist thing?

mawbroon I am so relived that you said only a local was needed as I have literally just read on another webpage "may involve a general anaesthetic" and my heart sank! Phew! Am already worrying about the possibily of needing to find money for this sad

Thank you again for everyones posts!

Chipandspuds Wed 26-Feb-14 22:49:23

DS had this, looked most like picture 5 in the link. Shame that I didn't know about it until after we moved onto formula feeding because he couldn't latch on!

With DS's, he actually fell over when he was learning to walk and spilt the lip tie. Not too much blood thankfully. He had a small gap between his top two teeth now and if I hoick his top lip up I can still see a tiny lump where his lip tie split.

From reading on mumsnet I think all newborns should be checked for tongue tie and lip tie especially if the nhs is trying to encourage breastfeeding!

mawbroon Wed 26-Feb-14 22:51:20

Most dentists are underinformed about it too I'm afraid. <no offence to any dentists, but it's true!>

Yes, the money is a factor to consider too sad Both the dentists who are doing laser charge in the region of £350 to £400 for the procedure including the consultation I think, but don't quote me on that!!!

HumphreyCobbler Thu 27-Feb-14 21:04:49

I had the posterior tt and upper lip tie done by Dr Levinkind today. I thought he was excellent. Everything was explained clearly, the procedure was carried out in 15 minutes and although I could hear ds crying during it, he was smiling and happy when he came back into the room. The latch was immediately improved - his top lip is now able to curl back properly and he didn't swallow any large gulps of air.

I am delighted and looking forward to a more successful breastfeeding relationship. Slightly nervous about remembering to do the stretches, I would hate for it to grow back.

PonceyPeas Thu 27-Feb-14 22:39:01

I'm so pleased I've read this thread. My DD is between picture 5 and picture 7 on the link (more like picturd 7 so I think its pretty severe lip tie). She had a to gue tie snipped at 3 weeks, and although we haven't had too many issues with breastfeeding (I guess I'm a lucky one), she has never been able to have her top lip in the correct position when latched on - which I guess is caused by the lip tie. She also has very full lips, but when she smiles her tol lip goes flat, again caused by the lip tie. I'm definitely going to see my GP now to try to get it resolved before any teeth come through.

mawbroon Thu 27-Feb-14 22:46:12

Expect that your GP is probably not going to have any knowledge about a lip tie....

lollipoppi Fri 28-Feb-14 08:00:09

Humphrey that's great news hope things improve for you!

I'm going to see our GP today with DD with something unrelated so I'm going to ask them about it again, not getting my hopes up though!

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