Tongue Tie Support Thread?

[Wholelottalove]

I've noticed a lot of posters recently in this topic whose babies have tongue ties or possible tongue ties and thought it might be good to have a place to share information/stories/support.

Both my babies have had posterior tongue ties divided at 8 and 4 weeks and whilst I went on to feed DD happily for 10 months things are still not 100% with DS (now 10 weeks) although much better than they were. In my experience many HCPs do not recognise TT or the problems it can pose for BF in particular.

To kick off, here are a couple of links I found helpful:

Info for parents on Unicef website: www.babyfriendly.org.uk/items/resource_detail.asp?item=439

UK locations where tongue tie can be divided:
www.babyfriendly.org.uk/items/resource_detail.asp?item=440

NHS exaggerated latch leaflet (see page 10) this seems to help get a better latch:

www.sunderland.nhs.uk/admin/mopil/pdf/20060405104105.pdf

Kellymom page on tongue tie:

www.kellymom.com/babyconcerns/bfhelp-tonguetie.html

Please feel free to add your resources/experiences/questions/comments. :)

Thanks for the link wholelottalove.. Much appreciated.
I am definitely going to be phoning one of the consultants to explore whether there is more we can do...

podmumlet Until you can get specialist advice it might be worth just sticking your tongue out at DS! This was recommended to us by the LLL lady before DS's TT was diagnosed, as she said that babies are great at mimicry.

DH spent days sticking his tongue out at DS and almost as soon as his tongue got free he started sticking it out too. I don't know whether that was a sheer fluke but it might help you feel like you're doing something while you're waiting for a specialist contact.

I had painful nipples from day one and asked for help over and over in the hospital but received so many different opinions before being told not to worry as she was latching fine. Took her home and nipple pain got worse and worse over the next week. Got to the point where I was sobbing with the pain, nipples were bleeding, cracked and even a little infected. Finally called HV in tears on new year's day. DD was 8 days old. HV came round, had a look, then arranged for me to go back to the hospital that night and speak to the breastfeeding counsellor. She was absolutely brilliant - took one look at my boobs, grimaced and told me to start expressing immediately and give myself a chance to heal up. She also told me to see her associate on the following Monday who would be able to confirm her suspicions that it was a TT. Sure enough... Was referred to the specialist and was lucky enough to get an appointment in the middle of a blizzard and had it snipped at 13 days. I had to continue expressing for 5 weeks and have a course of antibiotics to clear up the infection (not mastitis, just in my nipples) Breastfeeding consultants were fantastic, one even gave me her home number, and came and sat in my house and helped me get her back on after 5 weeks on the bottle. She's now 14 months and still bf. So glad we had the help we did. But I was shocked to discover there are only 3 bf counsellors to cover our whole region, and most MWs and HVs aren't trained about TT at all.

Makes me so and :( that so many people are suffering, desperate to do the best for their children and BF, and are not getting the support. I had an emCS (opposite from the drug free natural birth I had wanted) and was already feeling like a failure for not being able to birth my own baby, so when I felt I couldn't feed her either, the last thing I needed to hear was people suggesting I just give up and FF. I am eternally grateful for the help I received.

dorcas I really feel for you, this is the situation I was in at 4 weeks. I didn't think I could do another day. After the division, DS fed much better and I thought we were home and dry, but then after a week or so he went chompy again, it got better, went downhill again, mastitis, better etc etc and suddenly something has clicked and I just realised this morning I'm pretty much pain free (he is 10 weeks now). I think on one of the weeks he was chompy I was almost as sore as I was pre-snip for a day or so but in the main there has been an improvement with dips if that makes sense. I am cautiously optomisitc now as between 10-12 weeks was when DD finally got it as well (although her TT was only snipped at 8 weeks).

I suspect both mine have issues with their top lips (DD has big gap between front teeth) and I know DS has a high palate so I do think I was always going to have issues even with the TT snip until they got bigger and their mouths got bigger. On saying that, DS was retracting his tongue at feeds up until this week, now he still isn't opening his mouth wide but with exaggerated latch/nipple sandwhich and the fact he's now using his tongue (he tries to latch now by licking my boob and opening his mouth about a cm so it takes patience to wait for any sort of gape).

Sorry a bit rambling, everyone is different so I can't say for sure if things will be easier for you. I really hope you get your referral very soon - I would nag and make sure they know it is urgent. Good luck

I also second perservering with sticking tongue out and down for them to mimic. I posted the exercises I was given on another thread, will try and find them, although we gave up with DS as he wasn't playing ball with doing the exercises.

Would really appreciate seeing a link to those exercises wholelottalove. So far, baby is imitating big cheesy smiles, sort of gaping (but still not wide enough), but just won't imitate sticking his tongue out..

Aha, found it: www.mumsnet.com/Talk/breast_and_bottle_feeding/1102029-Posterior-Tongue-tie?pg=2 the exercised were on the 2nd page of the thread.

About the tongue sticking out - my DS didn't do it either (although he was much older and set in his ways). I got a bit despondent about trying the mimicry but other family members really helped out - everyone was sticking their tongue out at him! He eventually did it - thus proving he could.

I know you're not supposed to use dummies but other things can also help... DS was able to start BLW soon after his op and that made a big difference, so I was thinking maybe teething rings, or toys to chew on/mouth might be good for the younger babies? Anything that gets them moving their tongue will help. Just an idea.

Thanks wholelottalove. Hope things are continuing to improve for you. We have now had it confirmed that it is a posterior tongue tie, DD has very little mobility in her tongue (bless her!), we are booked in for getting it snipped tomorrow. I can't believe it has taken so long to get this diagnosed- and it has only been diagnosed because I have consulted private lactation consultants. I have had some lovely support from NHS breastfeeding counsellors but I can't believe that they do not know to check for posterior tongue tie. Surely this is something that could be checked for at birth? Anyway, I am hoping things might start to improve after it has been snipped. I am trying not to expect an overnight miracle, but things certainly aren't going to get better if we don't get it done and at least I will know that I have tried absolutely everything to keep breastfeeding my daughter. Anyone have any advice/ tips about increasing our chances of successful breastfeeding after this procedure or is a lot of it down to luck? I get the impression that some people see an instant difference and some don't.

Fingers crossed for you. I think lots of feeding and doing the tongue exercises if you can and your DD is happy to do them may help. Ask the LC at your appointment too - they may have some more ideas. I believe TT used to be checked for at birth back in the day but there is little training of MW or recognition of the condition or that it can interfere with BF these days IME. Posterior TT seems to be the worst as it has to be felt and isn't always as obvious, but the LC I saw said it can actually cause the most issues with BF. My DS like your DD had very little mobility in his tongue before the snip.

I think to an extent it depends on how it heals and I think it can also grow back. I think maybe DS's healed tightly as we had such an up and down time after the snip.

To give you hope, I am cautiously declaring us pain free finally (he is now 11 weeks) although it may still go downhill again, I think we've turned the corner. :o DS is also stacking on weight and on his line on 75th centile so I think we've come through the other side now.

Let us know how you get on.

That's great news WLL

Bump for CJmommy

How are you getting on dorcas111 ?

Thanks WLL

We are seeing lactation consultant tomorrow. I am convinced DD has a posterior TT;

• Dropped 3 centiles
• Clicking noise when feeding
• Lipstick shaped nipple with white end
• Can't move tomgue to roof of mouth
• Can't move tongue passed inside of bottom lip
• Constantly feeding (and i mean constant!!)
• Bottom lip slips up when feeding
• Sore ish nips

Does this sound like a TT?
I have come to the conclusion that my poor DD is permanently hungry . If I give her a bottle of EBM (3oz), she has a lovely contented look after which she has never had following a bf.

She is 11 weeks now, so does that mean she will need a GA to get it sipped? I so want to carry on BF but can't pump anywhere near enough to continue topping her up at each feed!

Hi, sorry it's taken me a while to update. We had the tongue tie snipped and things have been improving I think, although it is very up and down. Sometimes she latches on well, but sometimes not-she still isn't always using her tongue and it can still be quite painful. To complicate matters I have got thrush in my nipples which is also very painful and it makes it hard to be sure how much of the pain is from the latch and how much the thrush, if you see what I mean. We are doing the exercises and I am persevering, although it is hard sometimes. I just want things to start getting easier! Any advice would be much appreciated. Also, has anyone else who has had their babies TT snipped found that improvement was gradual rather than instantaneous? I'm just wondering if there is still hope?
Actualy WLL I've just noticed that you had an up and down time too, do you think that things could get better for us too?

dorcase111 it wasn't instantaneous improvement with ours in that we didn't notice any improvement in the amount of top up she was getting over the following days, but she did seem to have a stronger latch and didn't get tired out as she did before, iyswim. However, I'm not the best person to ask as it was a few days after the TT snip that I stopped the regime of BF/top up/express and went to only BFing followed by top up twice a day and just bottles the rest of the time (and no more expressing!). I think my milk supply was totally buggered really affected by this point, so who knows if it had gotten better if I had stuck at it for a few more weeks. But I'd had enough by this point.

So, bumping for you and hopefully someone else can help. Hang in there.

CJMommy hope your appointment with the lactation consultant goes well and you get some answers. I'm no expert, but it does sound like it could be, certainly a problem with a latch. Hope you get some help.

Sorry it has taken a while to come back - DS has been poorly and missing feeds which meant the dreaded mastitis rearing again - I am so prone to it that a bit of engorgement can set it off.

CJmommy how did it go today? IM(limited)E it does sound like TT. IIRC the LC I saw was happy to do them up to 12 wks. Just realised you saw someone today - how did it go?

dorcas well we definitely had v up and down time and not 100% even now. I think it helps as they get bigger. It can take thrm a while to get it and then sometimes it seems 2 steps forward and one back. All I can sai is it did get better for me both with dd and now with ds so worth perservering for a bit if you are happy to carry on. Hope it does improve for you, you are doing so well to get this far.

yikes am 1 handed sorry again for typos

Well, I think today went pretty well. The LC agreed with all the signs/symptoms etc and had a look a DD's tongue. She said there is definately a problem but couldn't see anything that could be 'snipped'. However, she has referred DD to another LC who does snip TT's regularly for an expert opinion; hopefully we should see her within 2 weeks.Although, I'm not sure what will happen if she can't snip it?

In the meantime, I need to supplement which I am going to try to do with EBM. They have lent me a Medela Symphony for a couple of weeks to help boost my supply.

However, they said to supplement via cup feeding as this will aide her tongue movement............we tried this tonight and it was a complete disaster!! She won't keep her head still so it ends up everywhere! Both DH and I tried and swaddled her but was hopeless so ended up giving her a bottle of EBM which she took like a dream.

Does anyone have any tips for cup feeding?

update
DD had TT snipped today. She fed straight away but not sure that I noticed any difference? She's now refusing to latch and screaming so we've given her some calpol, a bottle of ebm (as advised by LC)and DH is trying to get her to sleep.

Hi CJMommy :)

I posted waaaay above with my experience, but wanted to reassure you a bit (hopefully).

DS had his TT snipped at 11 weeks. I didn't notice a huge difference right away, but over the following weeks it did keep improving.

He fed initially, but did have a very grumpy night. I gave him Calpol, he eventually slept, and I gave him Calpol the next day too (just in case). He bf the next day, and seemed fine from then on. I was a bit of a wreck though, and watching his every move :)

Hang in there...

browneyes Thanks for that. I've just re read your story and it's not disimilar to mine. I'm quite angry that i had been asking about it from when DD was 4 weeks and we had to get to 11 weeks before anything was done. All those weeks of feeding and trying to establish a supply and now we're back to square one!

Am feeling a bit low today, just fed up with the continual feeding and expressing...but will keep going. Think I was hoping that I'd see some improvement, I know it can take some time though. May give DD some calpol today, thinks she's still a bit grumpy!

CJMommy Hi, just wanted to check in - sorry to hear that you're feeling low today. I know how tiring it can be continually feeding and expressing - god, expressing sucks! and how sometimes you just get fed up. Just wanted to say that you've done amazingly well getting this far, and that I hope you see an improvement soon.

Hi everyone
My NCT breastfeeding counsellor told me yesterday my 16 day old has tongue tie. Waiting for midwife to come today with referral form - how long does referral take on average & will they snip it then or make another appointment?
I lost 1L blood after delivery & was told this had affected my supply & I had to top up with formula because of >10% weight loss day 3 - I didn't want to do this but was so weak felt there was no other option. I feed all day practically and top up about 4-5 times (although yesterday only twice - hoping to reduce as much as possible & EBF soon). I asked for tongue tie to be checked in hospital as my dad had it - the paed just poked her finger in, didn't look underneath. This is despite sore nipples from the start, latch checked & ok'd by loads of midwives, constant feeding, shaped nipples & low weight gain. Plus he also struggles to feed from the bottle and lots of it runs out his mouth. The BFcounsellor said thry doctors had put together blood loss & weight gain & assumed supply problem but she says supply is fine - just needs more stimulation. I'm annoyed because a friend who had her baby the same day, same hospital and also lost >10% was taken back into hospital and helped to feed / express whereas I was just told to top up with formula. Feeling like I could make enough milk for him has been making me so blue, I really hope the doctor will be able to see/treat the tongue tie & that it will make a difference for my little one.

Anyone else having horrendous nights of feeding, baby will only fall asleep on me, try & put him down & he's awake again for feeding - the cycle goes on for hours and then I feel guilty for keeping him at the breast when he's struggling.

Hey CJmommy how are things? Just wanted to echo what theborrower said - you've done so well. I hope you are feeling better/feeding is going better.

Hi LauraRose congratulations on your new baby son :) I think referral time depends where you are in the country. I know if you go private they tend to snip it there and then. Really annoying the paed didn't look properly - this happened to me too, even though DD had TT and I asked them to check. Some of the all night feeding might be because of your DS' age - they want to be close etc. Falling asleep on you is definitely very normal at this stage and instant wake up as soon as you put them down also normal. Hope you get your referral through soon.

I was bottle feeding DS breast milk with formula top ups at 2 weeks and he is now EBF and no bottles or top ups despite his TT still not 100%

Brief update on us is that I still seem massively prone to mastitis and a little bit of engorgement triggers it off. DS still has a rubbish pinchy latch which is a tad sore again the last few days. He is also feeding quite frequently and seems to have gotten into the habit of lots of little feeds so he's on for 5-10 mins max and often only one side per feed. V annoying at night as he fed 2 hourly last night and I couldn't sleep through it :( Am pretty tired and with DD to deal with too I'm starting to wonder what my options are. FF seems too much of a faff and I'm worried about giving bottles and buggering up his latch altogether. Hopefully things will ease off soon.