Sign in here if you were told your baby wasn't tongue tied, only to find out later that he/she actually was.

[mawbroon]

Me for one. Except he was 6 by this time.

And I was told it by the paed surgeon who used to run the tongue tie clinic.

FFS

Campaign thread here for anyone who wants to see a better approach to TT!

(reposting for ease of clickage from prev page)

After 3 weeks of breastfeeding hell with my second child, a 2 separate lactation consultants diagnosed posterior tongue tie. I attended my local tongue tie clinic and was sent away by the paed saying nothing was wrong. I felt patronised and was essentially advised by the (male) consultant to just man up and feed even though i was in agony! and didn't know where to turn. I persisted and went back to the lactation consultant who then referred us on to a london hospital where they specialise in tongue tie. My son had it snipped at 6 weeks old. Bf instantly improved and i am still feeding at over a year, no thanks to the original paed I saw. Apparently it is very common for people to be turned away as some paeds are not confident in snipping TT, especially posterior which can go undiagnosed.

I learnt I had tongue tie when DS was diagnosed. My mum still thinks she had 'the wrong type of nipples' to BF. She inspected them when I first bought DS home & said 'Ah yes, yours are much bigger than mine. Mine were too small you see.'

She took medication to stop her milk when my sister was born, as she thought it would be impossible

Does anyone know also about a possible link between lip tie and tongue tie and congenital defects of the midline or internal organs? It's something I keep hearing bandied around, but can't work out what it means or what it's based on

Just to say that I have a partial tongue tie. My mum stopped feeding me after a few weeks because I was making her red raw. As an adult, my tongue tie really doesn't affect my life: I can lick an ice cream, kiss properly and speak fine (all things on the other thread that people were worried about their children not being able to do). I can't stick my tongue out at someone, and I suspect I might struggle with some Spanish words with rolled Rs, and I would be a rubbish lesbian, but otherwise, please be assured that a partial tongue tie is not necessarily as terrible as some people fear.

Mawbroon, thanks for that :). I'll just see how DS gets on.

Something that I haven't seen mentioned on here (although I may have missed it) is the potential trouble for teeth with severe TT - because you can't use your tongue freely, you can't get it round the teeth to help clean the debris off them like people without TT do, pretty much unconsciously.

DH's TT definitely affects his kissing ability but not his speech; but I have a friend whose DS's TT was only picked up at 3 when I was teaching him to stick his tongue out and he couldn't and it definitely affected his speech.
Everyone is different!

I'm so grateful that the hospital BF expert, home-visit MW and paediatrician were all clued in where I had DS - sounds like there are some places where it's really hard to just get it sorted! :(
Now pg with DC2, I've already discussed it with my consultant and it will be checked immediately and divided even if there is only a small TT, because it made such a difference with DS.

Yes, clearing debris off teeth. It's called oral toilet apparently

Orthodontic problems too. DS1's palate is very high (caused by the incorrect swallowing action) and there is not enough room for his top teeth and his bottom jaw is becoming bigger than the top one (should be other way round) because of the mouth breathing and tongue thrusting.

Lookout I haven't heard about the link between tongue/liptie and midline defects - if you have any links I would be very interested.

Dd1 was checked by a MW for tongue tie because she constantly slipped off the nipple and was a nightmare to feed, the MW said there was no TT, but a few weeks later a lactation consultant said she did have a tongue tie. We switched to bottles, because by that time my supply had dwindled and I was in a dreadful spiral of expressing, trying to feed and mixing formula and breastmilk, and my nipples were like a horror film. We never had the tie snipped, and now you can see she still has the heart shape when she pokes her tongue out and has a slight lisp. She also has reflux (is reflux connected?)

Ds has a tongue and a lip tie, he had no suck reflex when he was born, and was in SCBU, so was tube fed, whilst i tried to establish feeding. Again a MW checked and said there was no TT, but later when he was being examined by a paed because of feeding issues, she said he had a TT, lip tie and high palate. He also has severe reflux, (and an undiagnosed genetic condition which effects his muscle tone and his overall development, but that is another issue!)

Yes, reflux is connected. The incorrect sucking/chewing action can cause a lot of air to be swallowed down.

dr kotlow

My TT has affected my speech, but not too badly. The main issue I noticed, and the reason I keep pushing to find someone who knew what I was talking about was that I had high palate, small jaw and some pretty extensive and painful dental work to fix it. I wonder, now, if my slow eating and occasional "drinking problems" (ala Airplane -- saw that recently!) are also related.

Very interesting thread! DS is four and a half weeks old and has been slow to gain weight: I've nor been overly concerned because his sister who is now 2 years old was the same and is otherwise absolutely fine. DA is gaining now though not as fast as he might do; feeding is reasonably comfortable for me but he doesn't always seem comfortable himself and certainly he never seems to open his mouth as wide open as on all the photos and diagrams. And talking to DP this morning (after reading this thread overnight after long feeds) he definitely has a TT and his mum wasn't able to bf him... So although feeding issues are minor at present, I think I'm going to definitely get it looked at properly, hoping it will improve things. (I have asked two mw's who have said he has no tr but given that others have been misassessed as many as 11 times I don't place that much faith in a negative assessment!)

My dd's TT was missed by paeds, midwives and also a max fax Dr and a Consultant dentist who dd had to see at 5 weeks as she was born with 2 natal teeth. I was having an agonizing time bf and the community midwives were getting really fed up as they still couldn't discharge us after 3 weeks. They put so much pressure on me to ff her. They told me my breast milk was of poor quality!
In the end after crying hysterically down the phone to an NCT breast feeding counsellor it was the counsellor, OVER THE PHONE, who said it sounded like dd could have a tounge tie and told me to go to a local bf support group which was run by a specialist midwife who was an expert in diagnosing tt. Within 2 weeks I had been to the group, been referred to Kings College Hospital in London and had the snip. And from then things improved so much and I bf dd until just recently when she was 23 months old.

Yel... Paed told me I was being dilly and his tongue wad fine.

Massive feeding issues and lack of speech.

SALT referred us to another hospital and he got the op there thank god.

Ive had issues with the first paed before though, he's a complete tool and I now refuse to accept appointments at his clinic, I ask for referrals to different hospitals.

Please say if I need to start my own thread but i am wondering if my 5m DS has a TT. I tried for 2 months to get him to bf and he never latched once despite support from various people he was born at 35 weeks so I think this was put down to him being early but I've noticed when he sticks his tongue out the tip looks like the top of a heart. Any ideas and does it matter? Thanks

Sounds like a TT to me, elliebug. Read the thread as to whether or not it matters - it's not just about bf'ing, it's about other things as well - speech, oral hygiene, palate shaping - take him to the doc and discuss TT and getting it divided if possible.

have a read of this

but don't be surprised if your doc/hv doesn't know much about it.

It seems that very often the parents have to take it upon themselves to learn about it and get the help they need for their children.

Ok thanks, have had a look in his mouth (while asleep!) and there is quite a bit 1cm ish of 'free tongue' in front of the frenulum and it doesn't look tight so I'm a bit confused now, will take him to hv and see what she says!!

ds1 had loads of free tongue. He could stick it out really far. He had posterior tongue tie which tethers down the back of the tongue and restricts the correct movement.

Don't be fooled by appearances, it's not how the tongue looks that matters, but how it behaves.

read this as well :)

Yep, and what mawbroon said, my DS's TT was posterior too but it still made one hell of a difference having it snipped!

I'm wondering if there are some experiential things (beyond the lists linked above) that are "signs" of tongue-tie?

There were several things that BF support and other people said to me that just didn't make sense with my experience. At the time, I attributed it to me being rubbish at motherhood and incapable where other people could clearly handle things better than I, but I now know it was because of the tongue-tie.

For example:
When asking, "how do I tell when she's done eating?" I was told to always offer more, and she'll refuse when she's full. But she never, ever refused. She never came off on her own except by falling asleep, and if aware of a boob, she always latched on. I didn't know what "refusal" was until after the clip.

I had several different HCPs ask at appointments, "Oh, is it time for a feed?" This made no sense to me. Of course it was time for a feed. My baby is awake, therefore she is hungry. I found it odd that they didn't seem to know this, since I had always heard "Newborns eat all the time". I now think that means, in fact, "Newborns eat frequently." Not literally all the time, which is what my baby did. I estimate we spent somewhere between 18-20 hours a day in the nursing chair with her on my boob. I found it difficult to find time to go the toilet, much less shower, etc. After the clip things immediately went to only 9-10 hours a day of actual feeding, and after a few weeks I couldn't even count it that way anymore because feeds only took 10-20 minutes. I'm not sure what the "normal" pattern is supposed to be for newborns, but I suspect we were spending much more time feeding than normal.

There were several things the books said to do "When your baby is alert, but not hungry," and "no sooner than half an hour after a feed." This completely mystified me -- this type of situation didn't exist: if it was more than half an hour after a feed and the baby was awake, she was hungry.

Does any of this sound familiar to other people?

Thanks guys thumbwitch that's really useful, I am only an hour from Leeds so if I have no joy with hv/gp it's good to know there is another option! I'm thinking it's better snipped than not cos by the time I know of it will cause probs it'll be too late! am secretly hoping someone will say 'thats an awful TT, no wonder you couldn't bf'!!

Was told ds had tt when he was a few minutes old and that it may cause feeding problems. Was in hospital for three days as had c/s and really struggled to bf. I kept asking about his tt but no one seemed bothered even when he had jaundice.

When home I asked two different midwives who came to visit and they didn't seem interested. I had a hard time bf my first baby so was determined that nothing was going to spoil my first few weeks with him. By the time I got to a bf clinic at 14 days I was mostly ff and when the advisor there said they didn't need to snip as it was mild I gave up bf completely. It really hurt and he was constantly crying.

Bottle feeding worked ok for us both until around six months and I started blw and he just couldn't move the food around his mouth and would gag and sick up everything he had eaten. Thought he would get the hang of eating eventually but after a couple of weeks switched to puréed and asked the gp for a referral. I had to be very insistent to get referred.

We finally had the procedure on the nhs at nearly ten months old and he can now tuck in with the rest of us. No anaesthetic and a quick snip. He cried obviously but there was hardly any bleeding.

I wish it had been done at a few days old.