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Tongue Tie Experiences Anyone? HELP!

(26 Posts)
MixedBerries Mon 24-Oct-11 12:33:22

Hi all. Was hoping to hear of other people's experience.
My baby is 6 days old today and we've had awful trouble breastfeeding...
although he seems to be gaining weight ok, he feeds for well over an hour at a time all the time, always wants feeding and my nipples are bleeding, blistered and practically falling off. When he's on the breast it is absolute agony throughout the feed.
Was told at the hospital and by 2 community workers subsequently that attachment was fine and it was just initial "nipple soreness" (understatement of the century). It was only this morning when a different midwife came and I explained that I simply cannot endure breastfeeding a second longer that she asked if he'd been checked for tongue tie. He hadn't (which I find a bit strange).
She says she's 85% sure that he has tongue tie and that's stopping him from sticking his tongue out to cover his gums when feeding. Only problem is that the specialist at the hospital who deals with this is on annual leave until next Thursday. That's a long time to wait.
So as an interim measure, I've been told to express every three hours and feed with a syringe and to try a feed occasionally once my nipples have recovered.
I suppose my questions are...
Has anyone else had this diagnosis?
Did you have the procedure whereby the baby's tongue is cut underneath to release it?
Did it help?
Could it be anything else?
Could you resume breastfeeding ok later?
Any other tips or advice?
Any help very much appreciated as I'm really at the end of my tether. sad sad

Pickle1234 Mon 24-Oct-11 15:18:26

Hi there, my DD was slightly tongue tied, she didnt need it cutting but it did affect feeding. She is now 9 months, breast feeding was absolutely excruciating, i managed for about 3 weeks and put her on formula.
I can feel your pain, I tried expressing, nipple shields etc but my nipples had got so sore that it just didnt help, even my midwife suggested bottle feeding (which is unheard of!! clearly my nipples were a mess!! lol).
If I have any advise I would say go on to formula, they say that even breast feeding for the first 4 days give the baby the best start, I would not put yourself through the misery and agony of carrying on.

RitaMorgan Mon 24-Oct-11 15:26:03

Definitely get it cut! My ds had it done at 3 weeks, and barely woke up when it was snipped. Better to have it snipped now as a newborn, because if it causes speech or eating problems later and they need to cut it as a toddler, it has to be done under general anaesthetic.

As Pickle says, tongue ties can cause awful problems with breastfeeding if left untreated. It's such a small procedure though and the majority of mothers find it makes a huge difference.

RitaMorgan Mon 24-Oct-11 15:29:47

You might find the NICE guidelines for tongue-tie in breastfed babies useful too - www.nice.org.uk/nicemedia/live/11180/31410/31410.pdf

browneyesblue Mon 24-Oct-11 15:48:01

DS had his tongue tie snipped at 11 weeks. It made a huge difference, and he is still bf now at 20 months. I remember how painful breastfeeding was in those early days, so you have my sympathy. Next Thursday must seem like an age away at the moment, but now that you have a possible diagnosis you are already a step closer to getting this problem sorted.

I did a combination of breastfeeding and expressing until DS's tongue tie was cut - it wasn't perfect, but DS certainly didn't have any problems with it (no nipple confusion, etc), or with breastfeeding afterwards. If possible, try to avoid using formula. At such an early stage it may have a negative effect on your milk production. Try to hang in there until next week. Make sure you have a good breast pump though - ask your midwife if the hospital can loan you one.

There are lots of similar stories to yours on the breast and bottle feeding board: here I would try reposting there for specific advice. The ladies there will probably be able to give you much more detailed info on tongue tie, expressing, syringe feeding and breastfeeding in general.

I wouldn't worry too much about it being an incorrect diagnosis - if by some remote chance the midwife has it wrong, the specialist will realise when they check next Thursday, and will also be able to see if there are any other contributing factors.

browneyesblue Mon 24-Oct-11 16:01:35

Oh, I forgot to say. Tongue tie can often be diagnosed just by the mother's symptoms. These include nipple trauma, a compression ridge along the nipple, and wedge/lipstick-shaped nipples following a feed.

There are many other symptoms (for both mother and baby), some of which are listed here.

There are also 4 different types of tongue tie. Some tongue ties are immediately visible, and some are 'hidden'. Some babies with Type 1 tongue ties (tongue is tied right at the tip) are able to feed perfectly well with no pain to the mother, and some babies with Type 4 (hidden, tied at the back) struggle to feed/leave the mother in considerable pain, and vice versa.

I think it's awful when I hear stories like Pickle1234 - as your DD's tongue tie was causing so much pain, it should probably never have been called 'slight'. Even if it was tied right at the back of her tongue, it must have been affecting the way that her tongue moved to be causing so much agony. The problem is may HCPs seem to think that a posterior tongue tie is a non-issue, because it looks less severe. The reality can be very different.

EmpressOfTheZombieDucks Mon 24-Oct-11 16:09:13

Hi, from a different angle, my tongue tie wasn't diagnosed until I was 11. Having it dealt with as a baby would have saved me years of speech therapy so it's well worth getting it snipped for that reason too. Good luck.

Emzar Mon 24-Oct-11 17:24:03

My baby's tongue tie wasn't diagnosed until 10 weeks, and we also had to wait a week for a consultant appointment. I got through that time by expressing all night feeds and giving them by bottle (night was the most painful time for me), taking regular doses of painkillers and being religious about applying Lansinoh.

You could look at the option of getting it done privately - I think it was around £120 for a local lactation consultant trained in the procedure to come to the house. Although we decided to wait for the consultant appointment in the end - we just preferred the thought of it being done in a hospital.

The procedure was quick, and although he cried at first he soon recovered. But it wasn't a magic solution for us - I actually found feeding got worse for the first couple of days - I guess because his mouth felt weird? Things did then start to improve, but it never completely 'solved' our problems - I still find feeding frequently uncomfortable and sometimes painful, and I still often express one night feed. But I'm glad we had it done - it improved things enough for us to continue breastfeeding, and we're still going strong at 6 months with no intention of stopping yet.

MixedBerries Mon 24-Oct-11 20:46:41

Thanks for the help everyone. Just carried out my first machine milking session and I have enough to feed the whole street! Next stage is to get it in his belly. The more I read about tongue tie, the more I feel sure that's what it is.
But what's really riling me is the attitude of the midwives/NHS in this area. Breast is best unless you encounter a problem.... Then you're on your own and you can practically let your baby starve as far as they're concerned. Waiting 10 days to even see the one person in the area qualified to make an assessment, never mind have anything done about it, is ridiculous when it comes to feeding a baby. Only one person in the whole of North Wales is qualified apparently.
So tomorrow we're going to investigate going private or just driving to a hospital in the nearest NHS trust in England to see if they can do anything.
Thanks so much again. It really helps to know I'm not the only one. It's so hard not to feel like a complete failure.

browneyesblue Mon 24-Oct-11 22:39:18

There is absolutely no reason to feel like a failure! This is beyond your control, and you are doing all you can to put things right. Tongue tie is very common, but unfortunately medical professionals aren't routinely taught how to recognise and treat it. Frustrating, especially as it is so easily treated.

There is a list of places that divide tongue ties here, and a list of people who snip privately here (including a woman in Wales). I'm sure La Leche League has a list/info too, but you would have to give them a ring or email them to find out what is in your area.

I'm really pleased to hear you managed to express okay. If you do heal enough to try and bf your DS in the meanwhile, remember to use Lanisoh and painkillers (if needed), and experiment with positions. I found that positions which allowed gravity to help DS's tongue to fall forwards were slightly better.

Fingers crossed for you (and don't you dare think of yourself as a failure!)

GlaikitFizzogOnaNeepyLantern Mon 24-Oct-11 22:59:17

DS had a TT snipped at 5 weeks. I had problems (understatment) feeding him while in hospital, the MWs and feeding advisor and the Paed all debated whether or not he had a TT or not. Decided not, then on his discharge papers it said he had a mild TT confused. The problems continued so I hired a pump and expressed until I could get a referral to the childrens hospital to get it assessed. To get the referral I had to go to the BF clinic, the first week was so busy DS fell asleep before we could be seen and they fobbed us off with a "best not wake him" if youare still having probs come back next week. We went back the next week and got the saught after referral but for 2 weeeks time because the one and only person who did the snipping was on holiday. So I continued to express for him until TT was snipped. But unfortunatly he never latched on after the snip. Well he would, then realise that he got his milk much easier from the bottle. I could have persevered, but by this time I had my little pumping routine going it was like going back to the very early days of contant feeding and sofa surfing, so I contunited to EE until 16 weeks finally sending the pump back at 19 weeks.

I'm glad we had it snipped as it could have caused him problems inthe future, but I am still angry that it was picked up in the hospital but nothing done about it and still angry that we were fobbed off that first visit to the BF clinic. And angry to find out that my friends sister is a MW in another NHS area, but trained to snip TTs as part of her duties.

I just want you to know my experience as getting the TT snipped may not solve the feeding problems you have but may save your DC having problems in the future

AnxiousElephant Mon 24-Oct-11 23:18:10

Oh so sorry you are having a difficult time sad Do you have any other local hospital/ GP who can do this? I would speak to the GP who will know if anyone else is available, its unlikely there is nobody at all to do this as it is a very simple procedure, just simply a cut with scissors! If the MW is 85% certain I would trust her judgement as she will have seen loads.
Releasing the tongue tie does help because they can open their mouths and get the tongue in the correct position to latch on. If your lo cannot stick his tongue out further than his bottom lip then this is a tongue tie and often you can see pulling under the tongue.
For your nipples try lansinoh before and after feeds, breast milk can help as it has antibacterial properties which can help healing.
Speak to the GP to rule out mastitis/ thrush - baby might have a white coating on his tongue if this is the case. Ask about an alternative for cutting a tongue tie. If you have the means it may be able to be done privately.

AnxiousElephant Mon 24-Oct-11 23:19:49

I would try nipple shields rather than expressing because he is so young and like others have said, once they feed regularly from a bottle they can lose the ability to latch well.

AnxiousElephant Mon 24-Oct-11 23:22:31

Mixed I know it isn't very orthodox but you could just go to A and E! See if they can do anything there, any surgeon who can operate on babies should be able to do it, it doesn't even need aneasthetic!

TheSecondComing Mon 24-Oct-11 23:27:55

Message withdrawn at poster's request.

AnxiousElephant Mon 24-Oct-11 23:30:13

Browney 'medical professionals are not taught routinely to recognise it' .......really! A sweeping generalisation. I qualified as a HV 6 months ago and was most certainly 'taught to recognise it' and refer to my local unit even if I remotely suspect one! My practice teachers who taught me had both been practicing for 20 years and more, clearly they were trained to recognise it! It is one of the first things I look for at the NBV.

browneyesblue Tue 25-Oct-11 00:06:46

Anxious - I apologise if your experience is different, but what I have found is that attitudes towards the importance/diagnosis/treatment of tongue tie vary wildly, depending on where you live in the country. It's brilliant that you were trained to diagnose tongue tie, and that you have a unit to refer to. My annoyance comes from the fact that mothers do not automatically have access to HCPs that have been trained to the same level nationwide. This is what I meant by 'not taught routinely to recognise it'. I didn't mean that there weren't plenty of HCPs who could diagnose and divide tongue ties - I simply meant that the training wasn't automatic, and that there are many HCPs out there with little or no experience in the area.

Where I live, HVs and midwives are provided with a sheet of A4 which (without pictures or diagrams) gives very basic information about Type 1 tongue ties. That (they were quite happy to admit) was the extent of their knowledge about tongue ties. If a tongue tie is actually diagnosed, there is nowhere in the county that will divide it. Sadly, this is not uncommon. I have heard similar stories over and over from different parts of the country.

MixedBerries Tue 25-Oct-11 13:29:46

Hi Anxious. Thanks for the tips. Nipple shields haven't really worked very well for us- possibly because I don't really know how to use them as no-one has showed us. But really, if I AM doing it right, the action he has to make to feed with a nipple shield is so far removed from breastfeeding that I think it may do more harm than good. At the moment we're just machine expressing and feeding by syringe to try to avoid nipple confusion. I'll try to feed from the boob at least once a day once my nips have healed a bit (they're honestly just bleeding scabs at the moment).
As for my experience, rather unfortunately, it really has chimed with that of others posting on here. We were observed/instructed on the breast by at least 4 midwives in the hospital and 2 community midwives before anyone even thought to check. I'd expected it would be checked for by the paediatrician before discharge but it isn't on their checklist apparently. (Why on earth not????!!!!)
We've looked into private care but that seems to involve a trip to Manchester (3 hours away) just for a consultation and even then it would be next week at the earliest so I guess we're better off waiting until next Thursday. Unbelievable as it sounds there really is only one person in the whole of N Wales trained to do the separation. (I saw your link, browneyes, and the lady on there is the one who's on annual leave who we're waiting to see). This amazes me. When I spoke to a different midwife on the phone last night about it she was soooo annoying and just said that in some areas they don't offer the "service" at all and that babies in those areas just have to bottle feed. That's helpful! I'm still sooooooooooo angry and I'm really worried we won't be able to re-establish breastfeeding after such a long interruption at such an early stage.
But again thanks for all the suggestions and support everyone. Back to my breast pump....

Erac Tue 25-Oct-11 17:36:12

Well done for persevering!! Keep going!

I had similar situation and share your frustration with diagnosis/treatment. DD diagnosed with "mild" tongue tie BY ME (and confirmed by midwives/doctor) within 12 hours of birth. Got a referral for 3 weeks time, but by day 5 I was in agony and baby wanted to feed nonstop. It was relentless.

If it hadn't been sorted by day 6, I would have switched to formula by day 7 and never made it the 3-4 weeks for a consult. Luckily, we saw a private lactation consultant, who cut the thing and also helped with positioning. BF was loads better almost instantly and completely painless within a few days. Still going at it 8 months later. smile

Interestingly, the consultation said tongue ties can be hereditary. And I found out during the session that I also have a tongue tie! Explains why my mother couldn't BF me after the first few days.

I agree with others. Lansinoh and painkillers are your friend right now. And hot showers. And Kellymom website. And be on the watch for plugged ducts.

I'm cheering you on from the finish line.

specialknickers Wed 26-Oct-11 14:19:00

Berries as others have said, hang in there. Feeding a tongue tied baby is AGONY, but once snipped your problems will be over in an instant. My DS was tongue tied and due to the crapness of the specialists I saw (I lived overseas btw) it took over 4 months to get it sorted. Unfortunately for us both, in the time it took to get the snip done his weight plummeted and I had to top up with formula at 12 weeks. I continued to mix feed him until he was 13 months old and stopped feeding by himself, but I really know in my heart that if he'd had the snip when he was first diagnosed, he'd have been fine.

Hold your nerve if you can. It will be worth it.

merrymonsters Wed 26-Oct-11 23:32:43

My DD (my third child) had her tongue tie cut at 9 days old. I knew when she was one day old that her feeding was wrong, but it took a few days to get the referral from the midwife and the clinic at the local large hospital only did it one day a week.

Like you, I found breastfeeding horrible and I was badly bruised. After it was cut, she could open her mouth properly and use her tongue and wasn't just sucking on my nipple. It took a week or two for the bruising to heal, but then it was fine and I was able to continue feeding her.

The cutting itself took about one second and she fed straight away afterwards. I really recommend getting your referral as quickly as you can.

beela Thu 27-Oct-11 10:40:40

As others have said, get it sorted it is really worth it.

Have you tried cup feeding with the expressed milk? If you google it you can get some advice.

We had a difficult start with DS for a number of reasons, and he was fed through a nose tube for the first 2 weeks, it then took a further week to establish bf and even though we were in hospital nobody would sort it. On the advice of a lovely lovely midwife at the hospital, we asked everyone we came into contact with and eventually our HV came to meet us after we got home and immediately said 'here it the number of someone who can help'! Got it snipped around 5 weeks I think. It's such a simple procedure and I think he cried more at his first injections than he did for his tongue tie snip, it's such a shame it isn't more routine.

It made a difference immediately and it did take a little while to adjust fully (DS had to sort of re-learn how to get the milk out iyswim) but we went on to BF for a further 12 months.

beela Thu 27-Oct-11 10:41:04

ps congratulations on your new baby!

MixedBerries Wed 02-Nov-11 17:43:00

Thanks again everyone. Just to let you know, we had our assessment yesterday with the specialist who's finally back from leave. He does indeed have a posterior tongue tie which may or may not be amenable to snipping. She said posterior ones can be hard to do so we have to be prepared for it regrowing or not making a dramatic difference. On the other hand, it may make a huge difference- there's no way of knowing in advance.
Having taken in all the information and weighed the pros and cons, we're going ahead and getting it snipped tomorrow. It's certainly worth a try if it enables normal breastfeeding. 10 days hooked up to an electric breast pump AND feeding with a syringe/cup has completely worn us both down. I really hope it makes a difference. On the plus and definite side, my nips are completely healed and we have managed a couple of short feeds using an exaggerated latch so maybe mixed feeding would be an option if the snip doesn't deliver amazing results.
Will let you know how we get on...

KSal Thu 03-Nov-11 08:56:36

good luck... I really hope it has the desired effect and well done for persevering. My DS had his snipped at 5 weeks, when i look at him now I think it's one of the best things i have done for him.

he was feeding within seconds of the procedure.

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