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Posterior tongue tie at 12 weeks - laser, snip or leave??

(19 Posts)
Splodge27 Tue 25-Jun-13 09:47:37

My ds has been diagnosed with ptt after a long road of 'no he isn't', 'maybe he is' from LC's and bf support groups. After consulting a private LC she confirmed he does have ptt, but I completely wimped out of having the procedure done as I felt I just couldn't put him through the pain now he was 10 weeks old and so aware of what is going on. he has always had good tongue movement but i have had pain through the entire 10 (now 12 weeks) and he cant sustain a latch so we end up latching and relatching repeatedly which is frustrating for us both. my nipples always come out lipstick shaped or pinched with a white line. I have oversupply so he has thrived from the outset but i can only feed in cross cradle and as i say just not a good experience for us both. The LC and i ended up agreeing to leave it a couple of weeks as she said the 12 week growth spurt includes their tongue and jaw growing so things might resolve naturally. we are now at 12.5 weeks and no real improvement. however, I can see ds has an upper lip tie too and it has never flanged out so now I am wondering whether to go for laser to do both as cant bear the thought of having the tt done and the lip tie is the real issue and also know the laser is more permanent.

Can anyone tell me if they were present for the laser revision, particularly if they saw dr levinkind? I heard from the LC when I asked her opinion on laser vs snip that the only doctor in London to do it (she didn't mention a name) won't let parents in the room during the procedure which makes me rather suspicious.

Really don't know what to do but just want bf to not be a constant struggle...

AndIFeedEmGunpowder Tue 25-Jun-13 13:49:20

I don't know about laser but I got DD's ptt snipped at 12.5 weeks and it was the best £200 I have ever spent.

I hadn't realised how painful it was to feed before the tie was cut and DD was like a different baby afterwards, I think mainly because she needed so much less energy to feed.

I left the room for the procedure but went back in straight away. There was hardly any blood. DD did cry loudly for about 15 minutes but then fell asleep and was fine when she woke up.

I have carried on breastfeeding her and don't want to stop yet. (she's 9 months)

Good luck whatever you decide.

georgettemagritte Tue 25-Jun-13 14:15:59

I left a slight sub-mucosal posterior tongue-tie without snipping, and the feeding issues (mainly pain for me) resolved as DD got bigger and am glad I left it.

Splodge27 Tue 25-Jun-13 18:36:23

Andifeedemgunpowder, I think this will be the case for me too in that I have had pain for so long I am almost used to it, but I am certain it is not meant to feel this way. Did you do the stretching exercises daily afterwards?

Georgettemagrite, what age was DD when it resolved? Do you mind me asking why you chose to leave it? It is such a dilemma for me!

Monikita Tue 25-Jun-13 19:05:46

Hi Splodge, we got my lo's submucosal PTT and ULT done with Dr Levinkind 2.5 weeks ago at 21 wo. He's absolutely brilliant (not cheap but definitely worth it). He doesn't let parents in the room but I wouldn't let that make you suspicious. I would find it difficult to concentrate with a worried parent in the room with me if I were him.

Because he uses a laser, the babies don't actually feel any pain - they scream because someone unfamiliar is messing with their mouth. The stretching was fine for us and is much easier if you use a tongue depressor (which you're given).

I would say do it if you're constantly having to re-latch. I'm surprised your LC didn't mention this but at around 12 weeks, your hormones stop controlling your letdown - then it's all down to your baby. If your ds can't latch properly he won't get much (which is what happened to us). After that my supply plummeted and I was fighting to keep it up with constant pumping.

DD's PTT and ULT was quite restrictive - I would have had a lot of problems when when weaning onto solids. ULTs can also cause dental problems later on (she can now also stay on the breast much better and create a seal).

It's been a very long road for us so if you want any more info, please feel free to PM me, or I'm happy to bore bear all here!

Sorry for the essay!

AndIFeedEmGunpowder Tue 25-Jun-13 19:32:08

Yes! We did the exercises a couple of times a day for about a week afterwards but it was just like playing for DD really. It took two or three days for her to get used to the new latch and I think the much faster flow of milk scared her a bit at first, but after that it revolutionised her feeding.

After I got the tie snipped MIL mentioned DH had one which had to be snipped at 9 months for solids/talking (she bottle fed him) so glad we got it done.

Reading all this with interest as DD has a lip-tie too so may well need your Dr Levinkind Splodge and Monikita!

Monikita Tue 25-Jun-13 21:24:48

AndIFeedEmGunpowder, yes they don't generally do lip ties on the NHS as they say there's not enough evidence they cause breastfeeding problems (this is despite the fact that their advice when latching is to make sure the upper lip flanges out!).

I read somewhere that snipping a lip tie has a much higher reattachment rate than laser, so that's why I went with Dr L.

After the ULT removal her range of sounds increased and then increased again after the PTT revision.

georgettemagritte Wed 26-Jun-13 11:56:47

I gradually noticed the latch getting better and easier (and less painful) between 12 and 16 weeks. But my DD's tongue tie was very borderline, the lactation consultant who diagnosed it was dubious about whether it was worth cutting and I wanted to wait and see if things resolved before taking any action. The latch still isn't perfect but it's a lot lot better.

georgettemagritte Wed 26-Jun-13 12:04:13

Oh and I chose to leave it just because I was worried about whether it might be unnecessary and didn't like the thought of the procedure - also the LCD said submucosal PTT has a high rate of regrowth and the latching problems might not even be down to that (DD had difficult forceps birth). As DD was thriving (I also had oversupply) I thought I would wait and see what happened and put up with the pain for a few more weeks. (Plus long waiting list on NHS for PTT in my area and private options v expensive.) Had several sessions of cranial osteopathy in the meantime to see if that would help the latch, but to be honest I think she just grew out of the problem (and I can honestly say that even though I still get occasional sore/pinched nipples that BF is now a great experience and I'm glad I didn't rush to have the tie cut immediately).

Monikita Wed 26-Jun-13 12:24:10

Yes georgettemagritte, I think had DD been thriving I probably wouldn't have done anything (I probably wouldn't have even got an LC in to look - I would have just carried on thinking the pain was one of those things).

Unfortunately, weight gain was always a struggle for lo and she had dropped from the 25th to the 0.4th percentile. The HVs couldn't work out what was wrong.

You are right about reattachment - this revision with Dr L was her third. The first two had been snipped (the second time it was done incorrectly by the same LC), causing scar tissue. That's also why I went laser for this final procedure. The stretching is also really important (the LC didn't recommend stretching). There has been little reattachment this time and none at all for the ULT. I just wish that I had got her lasered or stretched her tongue the first time and not been so hasty to get it snipped there and then. After the first snip before any scar tissue had formed, she fed like a dream.

DD only scored 8 out of 14 for tongue mobility - weaning and speech would probably have been affected (she would also click and choke on the bottle and just randomly as well).

Splodge27 Wed 26-Jun-13 12:41:08

Monikita, I could tear my hair out with the conflicting information you get from the minute you fall pregnant!! Worry about supply moving forward was something I specifically spoke about with my bf support group midwife and the private LC as at the group they mentioned that at 3 months you may worry you are running out of milk, which worried me with the fact currently ds just rides the fast let down with a shallow latch mostly and has to do very little work, but when I spoke to the LC she said your supply regulates at 6 weeks and I shouldn't worry about this with the tt! Aargh!

Your story is what I was hoping for us, Georgettemagritte as ds has such good tongue movement, it seems that he just pulls it back in his mouth too much when feeding- that things would resolve hence me waiting til now. I just also don't want to wait til a point that snipping with no GA is not an option and he is even more aware. Can I ask if you felt improvement followed by a bit of regression I.e. not consistent improvement over time or did it just keep slowly improving? I ask as one day I will think we have turned a corner and the next we are back to really pinched nipples and square 1 it seems.

Well, I'm waiting for a quote/email back from Dr L in the meantime...

Monikita Wed 26-Jun-13 13:00:44

Hi Splodge, I feel your pain! The conflicting information is such a nightmare and really doesn't help. It left me feeling very alone and in a dark place for a long time sad.

Your supply does regulate at 6-8 weeks but your breasts will naturally just produce what they think your baby needs after that - so if your ds gets one letdown from 12 weeks, that's what they'll produce. It may be that your letdown gives most of the milk and is enough for him. It wasn't in my case.

Monikita Wed 26-Jun-13 13:01:59

Oh, and whether you decide to get the TT revised or not, here's a link to some suck training you can do before each feed. It has been helping us:

Good luck!

georgettemagritte Wed 26-Jun-13 14:27:32

Hello - no it definitely improved only gradually and there were regressions - DD is 5m now and I still get sore nipples sometimes if she's been feeding a lot or in a position I don't normally use. But I can now feed in a range of positions (originally could only feed lying down and it would be much sorer in sitting positions, but gradually got a lot better). Originally the latch was very clicky and she went trough an agonising period about 3m when the latch would slip in her mouth and she would clamp down painfully but that seems to have stopped too - thank goodness!

My LC said the same thing about supply regulating earlier but I was definitely engorged until about 11-12 weeks before my breasts went soft and supply regulated (but DD is consistently on the 50th centile so no weight issues). She still pinches my nipples but it's now almost pain-free (though curiously - annoyingly my period returned early, at 4m - I find the nipples are sore just before the period so it must be affected by hormones too).

georgettemagritte Wed 26-Jun-13 14:46:10

It does sound like Monikita's lo had a more severe PTT - apart from the nipple pain my DD's was so borderline it took several checks to be diagnosed and the LC was very equivocal on whether it should be snipped - DD had a lot of tongue movement and it was only really causing problems for me, rather than for DD.

AndIFeedEmGunpowder Wed 26-Jun-13 22:26:23

Thanks for the info Monikita. Did you hear back from Dr L. Splodge ?

Splodge27 Thu 27-Jun-13 16:22:19

georgettemagritte, it does seem we have a story very similar to yours in that the midwives and LC's are not 100% sure how serious the tongue tie is. The LC did say, however, that his score on the oral exam was higher than she expected. I worry that they are grasping at straws to some degree, trying to diagnose something, as I have had problems for so long now. We do both fit a lot of the symptoms for both mom and baby for ptt, but I was praying it would resolve as he got bigger as the procedure is of course not risk free. I completely understand having it done immediately if the baby is not thriving, Monikita & Andifeedemgunpowder.

No word from Dr. L annoyingly, will get on the phone to him today.

AndyJohnsonCreek Sun 19-Feb-17 19:09:18

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

CatsCantFlyFast Sun 19-Feb-17 19:15:41

We had a ptt cut at 8 weeks and the thought was worse than the actual. She didn't even cry and though it obviously felt weird to her by the faces she was pulling afterwards, she was not distressed in the slightest. I was dreading it but would do it again. She also has the most severe grading of lip tie (graded by dr Levenkind). I wimped out of having it lasered after much research - I decided I wouldn't have it done myself without anaesthetic and therefore wouldn't do the same to her. The tongue tie snip took seconds, I was able to hold her during and afterwards she went immediately on the breast. I'd have it snipped.
(Incidentally my dd2 is now 6 months old and I'd still opt for a snip if she happened to be diagnosed now)

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