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. :)

dh has tongue tie so as a salt I knew what to look for and diagnosed ds at two days old. He was a constant feeder, slow to gain weight, quite unsettled. Surgeon called Ann Lawson at rvi in Newcastle did his snip, and was very quick to see him. Nonfollow up though, and very limited support and knowledge from mw and hv. Both assumed I knew more than them...
By 10 weeks he had dropped four centiles, and as I also had 4yr old and no time to express (was rubbish expresser anyway) i slowly moved him to ff.
We had loads of help from bf counsellor, because I was pushy for it. However, even she had to concede i had tried everything that could be tried.
I think in most cases the surgery IS useful though, and is over in seconds. I would do the same again despite the poor outcome because at least now he can lick an ice cream!

Favorelles - if your baby is more than 12 weeks I'd wait and see if feeding is going well. They do have to relearn to use their tongue if they are a bit older and I've read it can making BF a bit more difficult for a week or 2. There is also the possibility it will need to be done with anaesthetic which I wouldn't want to do.

My boy is 8 months and 'unsnipped', feeding is OK now after a bad start.I wouldn't do it now if they offered (which they won't) The paed has said they will reassess him at 15 months and see if they think it needs doing then in case of speech probs.

I believe it's also possible that the tie can stretch out a bit on it's own or they snip it accidently when chewing a toy or something.

I will be very reluctant to have DS undergo the procedure at 15 months due to the GA. They will have to tell me he's going to have significant problems.

These are just my rambling thoughts about it from what I've read btw :)

Thankyou everyone :)
Ds is 4 weeks.

That makes it more difficult to decide. I don't envy you favorelles. Can you get him seen by a specialist at one of the baby friendly hospitals, someone who can really tell you the pros and cons for your baby :)

Sorry faverolles not favorelles am trying to multitask and posting from phone :)

just a chip in, i am at work and shouldn't be on too long! I haven't read all the posts...
but DD had profound TT, couldnt move tongue, cut in 3 places ( anterior and 2 lateral ties) at day 6. Went on to BF for 8.5 months.

I am a dentist and have seen 2 adult patients ( 1 male, 1 female ) this week with TT, no problems, it doesnt always need snipping, some do, as it may result in talking difficulties etc, dunno if there is research- just what we were taught at dental school.

Btw- DD no LA, fed straight after ( nirvana, the best feed ever- profound change in nips after 1 feed!)

And no speech probs... BABABABABABGAGAGAG boooob booob boooby etc

I think whether or not you're offered treatment depends on where you live. I had DS at a hospital which was "out of area" and they checked for tongue tie on the day he was born. He was referred to a surgeon and treated when 5 days old, just a simple snip with a pair of scissors, he didn't even cry.

I BF and instantly noticed the difference. Before the snip, there was a flicking sensation when he was feeding, which caused a lot of soreness, and he was constantly wanting to feed. After the snip, the flicking sensation stopped and he fed much better and less frequently.

I spoke to a friend who'd had her baby at our local hospital. The tongue tie was picked up but she was told they don't treat it. She had problems with feeding him, spoke to her midwife and visited her GP but was unable to get a referral. With a newborn, she didn't have the energy to fight for an appointment and started FF instead. I think it's probably about money, like a lot of NHS things are...

orange and browneyes I'm not so sure about it being a money thing as I'm in France and we didn't get am auto snip at birth and my paed was very surprised the consultant she referred us to refused to do the snip (at 2 weeks). I really get the feeling (although I may be way out) that it's much more individual preference from the doctors' side, depending on whether they think a GA is necessary, their opinion on the necessity of BF and their perception of the likelihood of future speech impediments. I don't know how this subject is covered in training (if at all) or if there's much research been done on outcomes but it sounds like lots of medical professionals are working in the dark on this issue.

faverolles I don't envy your decision but I do wish you well whatever you decide to do. The deal breaker for us was the threat of a GA but when DS did his DIY job there seemed to be minimal pain so it might be worth exploring if it could be done without GA?

My experience was similar to browneyesblue.

I had terrible pain, my son couldn't stay attached to the breast, and milk went everywhere. My nipples were flattened after every feed, I had bad nipple blanching and I had shooting pain in my nipples that was twice diagnosed as thrush.

Seven people checked him for tongue tie before declaring him fine. He'd started out gaining well, but then his weight gain slowed by a third and I was feeding him hourly and trying not to scream from having my nipple licked repeatedly. Then I visited a baby cafe in Northampton (18 miles away) out of desperation having exhausted all local help. He was looked at and tongue tie was suggested. She said she couldn't guarantee my son had it, but offered to refer me privately or I could push for an NHS referral.

I opted for the private referral to Mr Griffiths at SUHT, and two days later DS was diagnosed with a posterior tongue tie which was then divided. He was 9 weeks old and I had been seriously considering weaning.

He's nearly 11 weeks now and it is easier. I don't think it'll ever be perfect as he also has an upper lip tie so can't make a seal with his lips, but I have been told that it'll improve further as his mouth gets bigger. It's a shame they don't divide the lip ties too, because they do affect feeding.

Especially since everyone said that with his weight gain in the early weeks (9oz a week) that feeding was going fine. Then I was told that around 8 weeks is when the milk production starts to become supply and demand based, and with a tongue-tied baby, they just can't get the milk out to stimulate the breast to make more. I definitely felt my milk supply was dwindling. I've been left feeling quite bitter about the 9 weeks of unnecessary pain I've experienced, and the weeks that it's taking DS to learn to use his tongue properly.

I am actually so upset about it that I'm hoping that if I can continue to breasfeed for a year or more, that I'd like to train as a breastfeeding counsellor so I can try and avoid this happening to other people.

faverolles - DS may be alright now, but if weight gain slows down or you're feeding a lot more frequently from week 6+, then it might be the tongue tie interfering. It's worth keeping an eye on.

Thankyou hab.
Every time Ds feeds, my nipples come out looking lipstick shaped and White at the end - does this indicate that he could possibly be having problems even if I'm not getting any pain and he's growing?
Sorry to keep going on - this Tongue tie thing is all new to me!

DD is 5 weeks old and had her tongue tie snipped nearly 3 weeks back. We are still working on improving our latch - the exaggerated attachment leaflet has helped us. We feed regularly, at least every 3 hours. I have not been putting my fingers in her mouth to try to tease her tongue out more, as was advised at the TT clinic...am I risking the TT reforming if I don't do this???

Sorry - just remembered as well (may or may not be relevant :))
When feeding my other three, when they went to sleep at the breast, and I pulled my nipple out, it would be really long. This never happens with Ds - it seems to be the same length, but a different shape!

Can anyone recommend a helpline where I could chat to someone about this to get an expert opinion before I see the dr next week? Thanks :)

My DS had his cut privately at 21 weeks, quite late. We had the typical problems from the start which we were able to improve with exaggerated attachment. I'm terrible at asking for help so at this point decided that "better was good enough", until at 4mo I knew that it really wasn't - I felt like a failure because bf still wasn't easy etc., and wanted to give up.

I really wish I'd investigated it sooner because his was a posterior tie and couldn't be seen. Who knew BF would be such a learning curve?

Different pov on TT in case it helps - I was diagnosed at age 11 after years of speech problems and snipped under GA. I had to learn to use my tongue properly after that but it made a huge difference to my life. Didn't find out til recently how much trouble my DM had trying to breastfeed. I'd definitely recommend getting it snipped asap.

Great thread!

My DS had a moderate TT snipped at 3.5 weeks old. We have had severe clicking sounds and 'flicking' of my nipple in his mouth, leaving me with painful, misshapen nipples. I know some mums have had almost immediate relief after having the TT snipped, but sadly, that hasn't been the case for us.

Over the last week, I have been trying to do the exaggerated latch technique, and need to find some ways to encourage baby to stick his tongue out over the gums, because despite the fact that he can move it now, he doesn't...

Does anyone know where I can get this type of specialist support in person? While the breastfeeding groups I have attended have been invaluable so far and helped identify the TT, I need more specific hands on support than being supported with the usual 'tummy to tummy' and 'nose to nipple' support.....

Is there a website with specialist advisers? Are these lactation consultants?

scubamummy - we were only advised to rub under the tongue if it looked like it was resealing, not to try coax the tongue out...

If your nipples are coming out white and lipstick shaped faverolles then I'd get it snipped ad he's doing YOU damage even if he is feeding well now.

habzamaphone sorry to hear you had such a hard time too :( It's great to hear that you want to use your experience to help others in the future.

I just wanted to say, don't give up hope. I remember writing on this very forum that I didn't think DS would ever have a perfect latch, and I accepted that I might always have some level of discomfort. To be honest his latch is not completely perfect, but it doesn't matter. Feeding is 100% pain-free, and it doesn't cause him any problems. He also appears to have a lip tie, so I flick his top lip out when I remember, but that's more out of habit than anything. I think it took a couple of months to get to the completely pain-free stage.

I remember how angry I felt about all that wasted time, and all the pain I went through needlessly, but that is a distant memory now - DS is 1 next month, and I could never have imagined reaching that stage before his tongue tie was divided. I do still get angry for others when I hear their stories though.

Fenouille I think you may be right about it being down to the individual doctor. Since my initial encounter with my less-than-understanding GP, I kept trying other GPs at my practice until I found one that suited me better - a mother of 2 who breastfed :)

I don't know of any helplines that give specific tongue tie advice, but maybe the usual NCT helpline (0300 330 0771) or the Breastfeeding Network (0300 100 0212) could help.

I also got email advice from [[http://www.laleche.org.uk/pages/about/helpline.htm LLL) - they also have a helpline. I think they know a lot about tongue tie, but can also give some great positioning advice.

I hired a private lactation consultant (it was the only thing I could think to do), and she was fantastic. I got her details from here

Ooops - that last link went wrong: La Leche League

typing 1 handed and will try and get back on later, but for specialist help podmumlet might be best to try lactation consultant who also specialises in TT division try www.lcgb.org/consultants_tongue.html

I am hoping it'll get better browneyesblue but I'm pretty sure his upper lip tie is holding us back. He can't flange his top lip properly and therefore can't make a seal. I'm getting so fed up of re-latching him a million times and getting covered in milk that sometimes I really feel like giving up. Constantly having to take him off and re-latch him is actually making my nipples really sore, and because he can't make a seal, if I'm not careful he ends up just sucking the tip of my nipple.

My DD1 has a tounge tie, it's right to the front of her tongue. We were told that she might have feeding issues & possibly need speech therapy when older but no one suggested it could be snipped

She is now 9 is very talkative & has had none of the predicted problems, breatfed til 1 yr. So don't worry too much if you choose not to do anything.

That's good to hear bizzie :)

BUMP for dorcas111

Thanks theborrower for bumping the thread and directing me here. To cut a long (and painful!) story short... After three weeks of struggling to bf my DD, being told by numerous bf counsellors that the latch was perfect, despite cracked, bleeding nipples that would be misshapen after a feed, (see my other thread 'struggling to get the latch right') a lactation consultant has said she thinks my DD has a posterior tongue tie. She had been checked for tongue tie several times and I was told she didn't have it- apparently it is trickier to spot than normal tongue tie? She has referred us to someone to get it snipped, which hopefully will be soon as I am finding it increasingly hard to breastfeed through the pain.
I'll have a read back through the other posts, I'd be interested to hear other people's experiences.