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Posterior tongue tie advice.... feeling very confused :(

(23 Posts)
GinMonkey Fri 15-Jun-12 16:14:00

Hi everyone, my 12 week old DD has been diagnosed with a posterior tongue tie - I had suspected something was up from the very beginning - her latch is always very shallow despite endless repositioning and relatching, she clicks during nearly every feed, and my nipples are always very sore (not an agonising pain and they have only bled at the very start, and now more recently I have a crack at the base of one nipple which is slowly healing). About a month ago I came across the concept of a tongue tie by googling our 'symptoms' and took her to our GP, who declared that she definitely didn't have the classic anterior tie and that her tongue may be 'a bit short' and there was nothing that needed doing. I left feeling not entirely satisfied so I googled a bit more and came across an independent feeding advice service and had my DD looked at, resulting in the PTT diagnosis.

So... the reason I'm posting is because on the surface of it my DD is doing great - weight gain on track, plenty of wet and dirty nappies and she's generally a happy little thing. She has her moments - she can be quite fussy of an evening and occasionally can cry inconsolably but there's usually a reason - being taken out of the bath, tiredness etc but overall I think she's doing fine. BUT I guess now I know there's a reason her latch is so shallow, I'm dithering about wether or not to go for the snip. We'd prob go for the private option and have had Ann Dobson recommended to us. I feel kind of selfish because from DD's perspective life is dandy - she often wants to feed every hour and a half during the day which I'm happy to do as we're cue-feeding, and she rewards her frequent daytime feeding with excellent nights - only waking to feed once usually.

Sorry, this has turned into a massive ramble... I guess I'm wondering what others would do in this situation, and if anyone out there decided not to correct a PTT? From my point of view, and this is why I feel selfish, I wonder if she could go longer between feeds if she had a more efficient latch from getting the TT snipped, and obviously if this would also result in less pain for me. From what I've read I understand the cut is a fairly minor procedure and she wouldn't necessarily be in a great deal of pain, but OTOH I don't want her to go through any surgery, however minor, if there's any way to avoid it.

I should also say - at the moment, her latch is such that her tongue doesn't seem to adequately cover her lower gums as she has a tendency to clamp sometimes and I can really feel it! This is what's caused the crack at the base of my nipple... I want to BF for as long as possible but I'm scared that the onset of teeth might end our BFing prematurely if we don't deal with the TT...

Any advice or thoughts would be great, I'm obsessing over what to do and just keep going in circles!

Bubbless Fri 15-Jun-12 16:32:42

hiya, my brother had the same problem as your DD but my mum chose to let him grow up with it
(he got it cut a few years ago when he was 13 after much teasing from me he would be rubbish with the girls... whoops!)
whatever you decide will be the best!

sc2987 Fri 15-Jun-12 16:41:14

I would get it done now. Once your supply settles down around 3-4 months she may not gain weight as well as there won't be an oversupply/forceful letdown any more.

And it can cause speech and other problems later on if not corrected.

My daughter's posterior tie (missed by all the NHS staff, diagnosed by a lactation consultant) was done at 10 weeks and the difference (in my pain and her efficiency) was amazing! She only cried for a few seconds and it's a very low-risk operation so it's definitely worth it.

GinMonkey Fri 15-Jun-12 16:44:01

Thank you smile funnily enough my DH was 13 when he got his own tongue tie cut, I didn't even know he had it until this stuff with DD...!

nextphase Fri 15-Jun-12 17:01:10

Just check what Ann's policy is for age of snipping without GA.
Round here they do it before 13 weeks, or after 1, under anaesthetic.

Both boys have been tt. We were told that either poor weight gain in Baby, long feeds, or pain for Mum were reasons to get it cut.

Personally, for 3 and 5 week old babies, I'm glad we got things sorted. Think its much better than it getting ripped by a misplaced spoon shudder.

She may well grow out of it, it may well rip, or it may cause problems. Cut it and it may grow back.

If I evey had another, I'd get it cut if it was debatable.

GinMonkey Fri 15-Jun-12 17:02:19

sc2987 that's my worry too... sad I do seem to have an abundant supply now, and the lactation consultant told me that's what's accounting for her weight gain, but that it might not always be the case. We have a consultation with Ann tomorrow which will hopefully help our decision.

GinMonkey Fri 15-Jun-12 17:04:29

Thanks nextphase - will check GA policy...

MsPickle Fri 15-Jun-12 17:12:05

Hi, my ds had a posterior snipped at 5 wks, no anaesthetic. He wasn't gaining weight and fed round the clock. It made an immediate and real difference. A friend's son had one snipped at around 3 months, also a great difference. Whilst poking around family members looking for the link realised my dsil has one, she ended up needling some speech therapy as a child. It's difficult to predict but if my next (due dec) has one I'd have it done ASAP. It's not nice but v quick and the horrid passed quickly. I'm in an area where it was NHS, don't know about private options. I was glad not to have to face a GA that little. Good luck with whichever route you chose.

SoTiredoftheWheelsontheBus Fri 15-Jun-12 18:24:00

Ds2 has this. I think we were in the same position as you, he was putting on weight well, but feeding very frequently to get there. By the time we got referred to the hospital he was 4 months, and the paediatrician said he would need a general anaesthetic. She said that he could lift his tongue up to the roof of his mouth, and because of the position of the tt, it is not likely to interfere with his speech. If it does, then it can be corrected later if necessary. Having put ds1 through a ga at 3 months (for a different reason) I didn't want to put ds2 through one that may not be necessary.

Ds2 couldn't stick his tongue out until he was 4 months, but now does it all the time. After telling the doctor he couldn't do this, he demonstrated it for the first time in front of her. With regards to the frequent feeding, she said maybe he just likes his food!

mawbroon Fri 15-Jun-12 18:52:54

Unresolved tongue tie can cause all sorts of problems including gut problems, wind, reflux, difficulties with solids, speech and dental problems, amongst other things.

For these reasons, I would say you should have it done now while it's a relatively simple procedure.

This is something I feel very strongly about. DS1's posterior tongue tie went undiagnosed and although the feeding problems we had were not too bad on the grand scale of things, he went on to have terrible gut problems and severe reflux when he was 5. We took the decision to have his tt revised (we had to go private and he needed a GA, so it was £££) and have never looked back. He's gone from a sickly child to a bouncing 6yo.

I wish that I had known about it when he was a baby and had the chance to do something about it back then.

nextphase Fri 15-Jun-12 20:05:40

MsPickle There is apparently a genetic component, so having had one tt child, you are more likely to have a second.

RationalBrain Fri 15-Jun-12 20:14:49

If you can get it done under local, it's a no brainer. Honestly, we had dd2's snipped at 6 wks or so, it took 3 minutes and it was so minor she fed straight after then dozed off in the car.

We also didn't have problems with weight gain, as I had oversupply and a fast let down, but the consultant said that problems could get worse as supply regulated, and the poor latch meant my supply might not keep pace with demand. Factor in possible future solid eating and speech problems, and it really was a no brainer.

If its a GA op by now, though, then I guess you would need to evaluate whether the risks are worth it for the current issues you have, rather than second guessing any potential future issues. Good luck.

Hunterj Fri 15-Jun-12 20:16:51

Make sure you get the right person to snip it. My baby's re healed twice. I was not imressed with Ann Dobson(did not have it snipped by her though). Had it done 3rd time by Mrs Caulfield(ENT consultant) she was very good, difference in procedure by someone who really knows their stuff is amazing. 2nd snip was at 16wks and VERY traumatic for us all! 3rd was at 23wks(no GA) and fine!

Righteousdude Fri 15-Jun-12 20:18:11

My dd has one. It wasn't diagnosed until she was 5 months. We decided we wouldn't put her through the op but I wish we'd known earlier, she's 10 months now. Feeding had never been entirely comfortable and she's now getting teeth and yes, I can feel it

On the other hand she's fine. I can take the discomfort. Also I have a total, complete tongue tie. It's never caused me any problems.

TreeHuggerMum1 Fri 15-Jun-12 20:29:21

BE WARNED: My DD had her TT done last month under GA at Torbay hospital and then proceeded to starve herself. She went 15 days without feeding and we were basically force feeding her thru calpol syringe EBM. It was horrendous, but I will says the staff were great and did say she was a very one off case. Now tho she is firmly back on the breast and feeding every 2 hr day and night for the last two weeks. I am hoping once things calm down she'll start going longer between feeds.
I wish it had been done much sooner or not at all.

Minstrelsaremarvellous Sun 17-Jun-12 06:12:17

My DD had PTT, snipped at 5wks and she dropped from 12 feeds to 8 over 24hrs almost overnight. She seemed happier and to find it easier. I'm so relieved/pleased we has it done!

GinMonkey Sun 17-Jun-12 13:53:56

TreeHugger that's awful sad must have been so scary for you.

Well, we had our consultation with Ann and I have to say I was quite impressed - I think she could tell I was feeling v conflicted about it all, so we just had the consultation without the snip, she was really nice and said I'd done well to get this far with BFing, and we should take our time to decide. She said our DD had a lot of tension in her neck and upper back, so we could do a few sessions of osteopathy before considering getting the TT divided. So that's a new thing for me to read obsessively about... Have to admit, being from a medical background I'm more than a bit sceptical, so if anyone has any insights they can offer that would be great!! Anyway - the fact remains that as DD is gaining fine and has plenty of wees and poos, I feel like we can sit on the decision to snip the TT a while longer.

Thank you so much to everyone who took the time to respond, I'm so grateful for your input!

Mombojombo Sun 17-Jun-12 14:18:28

Ann snipped my DS's TT and was very nice with it! Are you London-based (or home counties?) then? There's a charity which will never refuse to see a baby and you pay as much or as little as you can afford. Check out www.occ.uk.com

Wingdingdong Sun 17-Jun-12 23:42:42

Ann snipped DS's posterior TT. Still having major issues though (me, not him - he's still following the 90th centile thanks to fast letdown/oversupply- but at 16w I am noticing a sudden huge decrease in the amount I can pump, from 3-4 oz per breast 2 weeks ago to 1/2 oz per breast by middle of last week (started a thread on it). I've been trying to boost supply again and am up to about 2 oz, but am definitely concerned. I'm not leaking anywhere near as much either. DS seems to have thinned out a lot in the past week and I hope it's just that he's got longer.

So... yes, you can wait for a bit but keep an eye on supply around 16w, as others have said.

We've now been referred to the paediatric surgery team at Kings. Whilst I agree that Ann's very encouraging, relaxed, etc, DH and I got the impression she's a bit of a one-trick pony and her solution to the issue is going to be 'snip it'. At the follow-up appt we had (I called her out to the house in desperation as I was in absolute agony), she said that though there was some improvement the tongue was still restricted; basically we'd exhausted her resources. I wasn't at all impressed with the central London 'clinic' (a bar-room!), either (definitely stick to home visits). So whilst I want improvement, I don't want DS to have to have surgery, albeit very minor, for the second time (especially as he DID feel pain, whatever anyone says - bloody awful afternoon and unfortunately DD picked up on it all and had nightmares for a week afterwards); we're therefore going with the hospital now as they don't gain financially from snipping his tongue.

HOWEVER: cranial osteopathy does help. We saw Aidan Spencer at the Sunflower Centre in Brockley with DD; he was brilliant. We've taken DS to him as well - and since the last appointment DS has been feeding a lot more comfortably. I wouldn't say it's pain-free but it's no longer agonising, just moderately painful - which is compounding the snip/don't snip again quandary. Turns out Aidan is the osteo recommended by Ann too, but I had in fact already phoned him before we saw Ann. I have no idea what Aidan did last time, but something has released somewhere.

Good luck

apricot72 Mon 18-Jun-12 14:09:33

Just to add my tuppence worth...

DS2 (now 8m) had his ptt tongue tie snipped at about 18weeks (also by Ann). His feeding has got better in that he no longer screams when he is feeding and his latch seems a bit deeper. He is also much happier in himself. However I am suspicious that the tie has at least partially regrown as he can't really stick his tongue out, it doesn't lift up to the roof of his mouth and it just looks a bit restricted (to my inexpert eye).

But he is gaining weight well, finally seems to have got the hang of solids (after a couple of months of the food just falling out of his mouth) and as I say has turned into a very happy little thing. Breast feeding has never been painful for me either. So I am really undecided about what to do. I don't want to put him through the snip again as it was definitely upsetting for him and also if it's just going to regrow, what's the point?

We also had a few sessions with a cranial osteopath just after the ptt was snipped. He seemed to improve around this time but my husband the cynic reckons that was just due to his natural development and maturation, not to the osteopathy.... I'm a bit more open minded (and frankly would have paid for unicorn blood if I had thought it would help at that stage) though the theory behind it didn't really make sense to me.

Not sure if that is helpful or not!

GinMonkey Tue 19-Jun-12 16:24:35

Thanks all! We've decided that based on the fact that the TT can still be snipped at a later date, we're wussing out of a decision for now... In the meantime we're taking DD to the GP to see if we can get a referral to the consultant paediatric surgeon in a nearby hospital who does TT division, for yet another opinion... DD was weighed yesterday and on track so feel reasonably confident that we can delay a little bit longer.

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