Tongue tie... Any experience of it found late, did you get it cut?

(21 Posts)
hamncheese Fri 23-Nov-12 10:20:50

dkny exactly my concern, I don't want to put DS through it unless I can be fairly sure it is a problem. And I get the feeling as he is gaining weight that it wouldn't be considered that bad. On the other side though I now feel I can barely go out for the fussiness of his feeding and he is up every two hours at night feeding. What if tt cut wold help? It's very hard to weigh up the risk. But totally agree that if your LO feeds fine I don't see any reason to do it!

Dkny I totally agree - I think TT is cited as the cause for everything from shredded nipples to the conflict in Gaza. I think it definitely is the cause of some issues but there really isn't enough evidence to pinpoint what exactly, and to what extent. This is what makes it so difficult to make the decision to get it revised or not because you're operating entirely on what-ifs and mights. Even now I wonder if we did the right thing as the instant resolution in his gagging while eating solids may well have happened anyway. Despite the change in sensation when feeding (feels more like a newly-serviced Dyson than a hand-vac) it hasn't done anything to lengthen the time between his feeds as I had hoped and it has done absolutely nothing to help his sleep, although we were assured that it may take time for some problems to resolve, but that's the case for everything with babies. DH says at the very least we might be preventing future problems. There's that 'might' again.

It just needs more research really.

AngelDog Thu 22-Nov-12 20:25:11

The nice guidelines on TT revision say to use a general anaesthetic when the baby is more than 'a few months old' - I think this is interpreted differently in different parts of the country.

Laser revision doesn't require any anaesthetic as the laser anaesthetises it, but the only people doing it are in Huddersfield and London, as far as I know.

DknyQueen Thu 22-Nov-12 20:07:37

I was reading the excellent explanation by elphaba of why the NHS is reluctant to divide TT and I'm left wondering why is it that TT division is so strongly advocated here on MN.
When my DS was 4 weeks old I went to a LLL meeting to get advice on latch and instead I was advised that he had a very obvious and thick TT. I had never heard of TT before and was taken aback. The bf counsellor said the reason he was fussy was because of it. We didn't really have other feeding problems apart for oversupply on my part. She was very pushy in trying to convince me to get it snipped. Tbh after she went through the list of "symptoms" that TT can cause i felt that the list is so wide that the true cause can just as easily be anything else. Take fussiness for example! How many 4 week old are fussy? The majority to a degree at least...
Anyway, I wasn't convinced so I did my own research on TT and sought advice from my GP, a brilliant and very experienced physician. He said that he didn't "believe"'in TT as a possible cause of bf issues and he certainly would not recommend division it to us considering DS was basically feeding fine and gaining weight and I wasn't in too much discomfort.
Well we didn't get it snipped and I'm still bf at nearly 10 months. He's never had a bottle of formula of ebm either. I've been back to that LLL meeting but again felt under so much pressure about the TT issue that I'm not going anymore.
So basically my question is, how can people be so sure that TT is responsible for an array of symptoms which are very generic and common to newborns? And how can they put their babies through what is a surgical procedure, albeit a minor one, more than once at times without any guarantee that the bf problems are due to that and that they'll improve if it gets snipped?

McBaby Thu 22-Nov-12 17:46:36

The surgeon I saw NHS and private will do it up to 7 months without g&a.
Just had it cut again at the weekend for third time at 14 weeks. I also was told feeding and crying was enough - but this has not worked on first to attempts.

hamncheese Thu 22-Nov-12 10:31:09

Thanks so much for the info elphaha sounds scary but hopefully worth it? Still no sign of the letter here so expect you are right about the general if we need it done.

So many issues with our feeding, but at the same time if I don't know for sure tt is the issue I probably won't get it done... Certainly not under a general. Ugh it's so confusing. Had two brilliant feeding days in he house but as soon as we go out he feeds poorly again. And also does nursing strikes when I get my period. Just feel a bit like there is no point trying to work out what's wrong as I will never know sad

AngelDog Mon 19-Nov-12 22:16:46

That's great, Elephaba. Hope the discomfort eases for him soon.

I was also told no stretches - that crying and bf'ing would be enough, but have been doing the stretches & massages 3-5 times a day. It looks great 5 days later, but we're still having latching problems, particularly when feeding from the left breast.

Made an appointment today to get DS1 assessed <nervous>

PS OP it's from the age of 16 weeks that they'll only do the procedure under a general anaesthetic on the NHS, not a quick snip with scissors, so by the time you get your appointment your DC may fall into the 'too old' category like mine, just so you're aware!

Tongue tie done today!

I'm not sure how you're thinking of getting your DC's done, OP, but we went for a laser revision combined with cranial osteopathy. On the NHS, my DS is too 'old' for a quick snip with a pair of scissors. My HV referred him to an ENT, but told me the procedure would have to be done under a general anaesthetic (major drawback no. 1) and then when I got the appointment letter, I decided I most certainly didn't want to wait until JANUARY to see if his problems sort themselves out. Also, I'm not convinced the NHS would agree to do it because his problems are not severe enough to justify putting a six month old under anaesthetic, which is fair enough, and the problems he has only might be sorted by a TT revision - there isn't a good probability that they will, again making a procedure under a GA unjustifiable.

Added to which, the medical establishment are not by and large convinced by the implications of tongue tie, mainly because evidence remains largely anecdotal rather than empirical so, to be on the safe side, they do have to be conservative in their approach until the body of evidence exists for them to be more enthusiastic in their response to the issue.

So, we went private with a dentist who specialises in the treatment, using a laser rather than a pair of scissors, not using anaesthetic, and uses an approach combined with cranial osteopathy. I have to confess that, being part of the medical establishment myself, I am highly sceptical about the benefits of cranial osteopathy but appreciate an holistic approach to things, so kept an open mind, and had a session both before and after the procedure as recommended by the dentist. As I am desperate to do something about DS's godawful sleep, I will also be doing the recommended follow-up sessions with the osteopath as in addition to the tongue tie after-care, they reckon it will do something about his sleep. It won't do any harm, and if it does good, it will be worth every penny.

So the bit you actually want to know about grin As anticipated, it was more traumatic for me and DH than it was for DS. We weren't allowed in the room while they were doing the procedure so that we didn't get upset (very greatly appreciated!) and the staff were really lovely as they're obviously used to scared parents. The building was big enough that we couldn't hear a thing while they were doing it thank the good lord and all of creation as I was sitting there sobbing enough as it was. We took DS down and put him on the dentist's chair, then he was brought up to us no more than five minutes later - probably even less. I won't lie - there was a lot of blood on his face and it was trickling out of both sides of his mouth, but since he was beaming hugely hmm at the dental nurse carrying him, it obviously wasn't exactly bothering him! Added to which, my DS is a little sprinkler when he cries, and it keeps going for sometime afterwards. There wasn't a tear on his face or even incriminating blotchiness so, I'm sure he did cry, but not the pain/tearful cry we get with his vaccinations. They said his was the thickest tongue tie they've done, and it extended a long way back, so they took a bit longer than they ordinarily would, plus released a lip tie, and DS was still a little trooper. He went straight onto the boob when he came in - stopping intermittently to grin up at me with his gory face while he continued to bleed copiously on my boob - and was fast asleep about five minutes later.

The bleeding stopped within a couple of hours, and probably would have stopped sooner if he didn't keep shoving his hands into his mouth up to the elbow. I do think he's uncomfortable when he feeds because he'll start to latch then spring back whimpering (OK, screaming a bit) so I'm keeping on top of the Calpol and hand expressing to stimulate a let-down for him which definitely made him a bit happier.

If you are getting it done by a lactation consultant or via the NHS some other way, they probably won't tell you to do follow up massage/stretches, which are important to stop the tie from re-attaching. The dentist showed us how to do an easy massage of the revised areas, but is certainly a lot less intense about the need to do follow-up stretches/massage than many on the FB group seem to be. Here is a link to how to do the massage/stretches in the likely event you won't have them shown/advised to you when your DC's is done. The dentist said to do them at least once a day, but felt the fact that DS is still exclusively BFed, and often, means he gets more than adequate mobilisation of his tongue. I think I'll probably do them about three times per day to minimise the chance of having to do it again.

Right - I hope that wasn't too long winded, but I thought I'd put everything down that I would like to have known before going in! smile

hamncheese Sun 18-Nov-12 08:18:20

Thanks!

AngelDog Fri 16-Nov-12 19:38:24

FB link here.

McBaby Fri 16-Nov-12 18:19:13

It doesn't hurt my DD has had it done at 8 and 12 weeks and having it done again tomorrow at 13.5 weeks as it keeps healing! She is more distressed by the being held still. But feeds straight after and is ok with no adverse effects.

hamncheese Fri 16-Nov-12 09:12:08

Really looking forward to the appointment now. elphaba that's awful all that stress for you /your mum. It's exactly what I worry about if I don't push them to look at his tongue properly.

I'm kind of worried though as DS has a decent latch. He self latches and feeds fine lying down at night etc. I am scared a cut could make it worse just by changing it sad

Can someone link me the fb page to see I've got the right one? Thanks!

AngelDog Wed 14-Nov-12 21:22:01

Another vote for the FB group here <waves to mawbroon as well.

I had my 4 wk old DS2's tie snipped today. He gave one brief cry and that was it. Feeding has been more comfortable already, although I still need to work on helping him latch properly on one side.

I strongly suspect my 2.10 y.o. DS1 has a posterior tongue tie. He has very little lateral tongue movement which causes excess dribble, messy eating and an inability to pronounce s, sh and ch sounds. I wish I'd known about TT when he was tiny. Now getting something done about it is a much bigger deal.

I actually have a tongue tie myself - my DS's is identical, according to the lactation consultant who originally identified it. I never knew about it until I went to a new dentist just a few years ago who offered to snip it for me - I declined, as the only thing it has ever stopped me from doing is rolling my 'r's, although I always did wonder why I could never stick my tongue out like the other kids at school or even attempt to touch my nose with my tongue. The way I have to lick my top lip is to pull my lip in rather than stick my tongue out, IYSWIM. Doesn't stop me from eating donuts, unfortunately grin

Had a fascinating conversation with mum, though. She also never knew I was tongue tied until I told her. When DS's problems started and the tongue tie was identified she was surprised as she said she'd never had any problems with me. HOWEVER, when I was agonising to her about having to get DS's tongue tie seen to, she said, 'Yes, I had to send you for horrible tests when you were 9 months old and it was awful but you forgave me.' I asked her what horrible tests. Apparently, they endoscoped me, did a barium swallow and all sorts to check for a tumour or blockage...because I was suddenly only sucking for five minutes on my bottle, screaming with hunger, then only intermittently going back on before screaming again. Sound familiar? As mum was describing these symptoms, I think we both made the revelation at the same time. 'My God', she said. 'After all these years and all those horrible pointless tests. They ended up telling me it was behavioural on your part, which I never really believed.' She also told me that she found BFing agonising and had bleeding nipples but that the midwives told her it was because she hadn't conditioned her nipples properly. Despite this, she fully intended on persisting, but around 6 weeks I started fussing and pulling off the breast. Doctors and maternity nurses told her it was because her milk had dried up due to stress about returning to work, so she reluctantly switched to bottles. I think we just sat in shocked silence for a few minutes, knowing what we know now.

I think it was these stories, especially the fact that I did have new problems as an older baby, that strengthened my resolve to get DS's sorted, albeit belatedly.

I'll definitely keep you updated OP!

HappyTurquoise Wed 14-Nov-12 08:32:20

My friend had her ds's tongue tie cut when he was about 3 as it was affecting his speech development, and he was often frustrated at not being able to make himself understood. It took a little time for his speech to develop, but he did catch up with his peers, without a lisp.
My brother has a tongue tie, not severe enough to have been considered for an operation, and he has a slight lisp with some words. (Judging from the size of him, it never affected his eating/feeding!)

hamncheese Wed 14-Nov-12 07:59:29

Hope it goes well elphaba and would be great if you let me know how it goes and what results it brings. Poor soul, hopefully it won't be sore sad

Thanks for the info guys will head over to the fb page. I thought it was a growth spurt but he's been like this for over a month now so I am considering it could be something hampering his efficiency.

I'm getting my 26 week old DS's tongue tie revised on Monday <waves at mawbroon> He also started feeding hourly around the age yours has (only down from about 2 hourly or less, though), but it's never let up, which makes me wonder if it's contributing to his awful, awful sleep as his milk transfer might not good enough to meet his growth/developmental needs. He's also ready, and the right age, for solids but is just gagging and choking at any attempt with them.

We're absolutely sick with dread about it, as it's not done with any anaesthetic and DS's tie is very thick so might take a little longer than average (i.e. 30 seconds instead of 10), but I'll let you know how it goes.

It's a horrible 'what if' scenario, isn't it? It's hardly life threatening if you don't get it done, you don't know for sure if the problems they're having are related to that, or if you're even going to be preventing future problems, yet you choose to inflict a scary and possibly painful procedure on them for only a potential, not guaranteed, outcome. I just have to keep reminding myself that he'll still love me and won't remember having it done!

mawbroon Tue 13-Nov-12 18:38:54

Yes I have experience of a tie being divided later, but much later!! Like 6yrs later!!

I would suggest that you make your way over to the tongue tie babies support group on facebook. There is loads of information there from people who are very experienced in dealing with tongue tie.

Revision is not a magic solution. For some, it will make the difference straight away, but for others there will be some work involved in making up for the compensations that the baby has learned to do whilst feeding with a tie, as well as dealing with physical restrictions which may be present in the jaw/neck/head as a result of the tie(s).

Spoonpaws Tue 13-Nov-12 17:32:54

Hello

Neither of my children have had this issue, but as a breastfeeding student I thought I could pass on some of my knowledge.

It looks like you feel that the tongue tie may be causing your baby to feed less effectively. Have you thought about experimenting with different positions, for example an upright cradle hold (having your baby feeding whilst 'sitting' on your lap rather than being held across your chest, which allows milk flow to be aided by gravity and may help your baby stay attached. You may also find that massaging or compressing the breast whilst feeding encourages him to feed for longer as this will help milk flow too.

Research suggests that cutting a tongue tie is not painful, as the nerve endings in the frenulum (the bit that holds the tongue to the floor of the mouth) are very few. A change in feeding is not guaranteed although many mothers do notice some improvement.

Also, worth noting that many babies around the age of 15 weeks may start feeding more frequently or changing their sleep patterns, and this is not necessarily a sign that they are not feeding well - its a time of rapid brain development and babies are also starting to notice the world around them more too, so distraction and development can cause a bit of a 'blip' in feeding and sleeping around the 4-5 months mark.

hamncheese Tue 13-Nov-12 16:37:01

DS is 15 weeks. He fed well at the start so it was never brought up. Had some nursing strikes in weeks 8,9 and 10 screaming at breast. Managed to get him over it still bfing but he snacks, still comes off screaming at about half of feeds but is gaining well as feeding so often. He doesn't resist feeds much at all now but doesn't always feed well. He has progressively started to go less between feeds used to be every 3-4 hours now its more 1-2. Going with it and managing ok ish sleep wise etc. had posted before about it someone suggested tongue tie so I looked at his tongue and indeed it was heart shaped. Called the HV who said it wouldn't be one if he fed well at the start. However, went in for jags weeks later and he as crying and she noticed his tongue and said, 'oh it is a heart shape hmmm' and then that she'd check it out at the clinic 'in a few weeks' have been to the doctor and got referred to hospital about it though as wasn't going to wait.

So, has anyone experienced something like this? Did you have it cut and at what age? Does it hurt them and will it necessarily see to a improvement in feeding? The doc said the fibres did seem quite tight and he can't stick his tongue out beyond his lips.

Thanks for advice!!

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