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Infant feeding

Get advice and support with infant feeding from other users here.

Myths about tongue tie and how to get one diagnosed

15 replies

minipie · 27/10/2013 12:50

I keep hearing stories of babies whose TT was not diagnosed or not treated because of some of these myths ... and sadly I do see them repeated on this board sometimes... so here's a round up of things that are NOT TRUE, or not necessarily true, about tongue tie.

  1. If your baby can stick their tongue out, there is no TT.

Nope - my dd could and did stick hers out all the time, but she had a posterior TT.

  1. If it's not painful, there is no TT.

Nope - I didn't have pain until DD was 6 weeks or so (and then any time she had a growth spurt)

  1. If the baby's not losing weight there is no TT.

Nope - DD didn't lose weight, probably because she was tiny and I had a well established supply from lots of expressing. Also babies who are being topped up with ebm or formula won't lose weight, which can mask the fact that there is a TT.

  1. My GP/ HV/ midwife told me there is no TT

Some HVs and midwives can properly diagnose whether there is a TT. Others can't. Most dangerous of all, some think they can but actually can't.

A lactation consultant (private) diagnosed DD's tongue tie.

I have no idea how to go about getting TT diagnosed on the NHS. Does anyone have the answer to this?

OP posts:
SayCoolNowSayWhip · 27/10/2013 16:28

I had TT with both DCs. With DS (DC2) I made the midwife check at just a few hours old, as DD's wasn't diagnosed until 3 months.

At our hospital they have an Infant Feeding Specialist unit (NHS) which diagnosed both tongue ties.

HumphreyCobbler · 27/10/2013 16:41

I had ds's tt snipped at four days old. I noticed it as it was clearly visible. No one in the hospital checked despite my concerns over inability to get a decent latch and damaged nipples by day two.

Luckily for me we could afford to pay, if we had waited for the nhs to deal with it I probably would still be waiting at three weeks and ds would be bottlefed. There is no one trained to snip tt in my local area, so their policy is not to snip Hmm

minipie · 27/10/2013 17:05

that's an extraordinary policy Humphrey! Did someone actually say that was their policy?

SayCool, that's good that you could get it diagnosed in hospital (second time round at least). I saw a BFing consultant in hospital (DD was prem and was in for ages) but she didn't even mention tongue tie despite the fact that everyone was puzzled by DD's inability to latch.

OP posts:
Scoutfinch1 · 27/10/2013 17:23

Dd's tounge tie was firstt diagnoses by the bf specialist midwife at 10 days despite us asking for it to be checked in the hospital due to a family history of tt. The midwifes refused claiming that they don't do that anymore Hmm We were told by bf mw to see gp who confirmed a tt but claimed that there is nothing that they will do to it unless a baby is given a general anasetic and a tt not to be treated unless the baby is not feeding at all. This is despite me having severe cracked nipples and repeated mastitis that twice turned into abscesses. I mentioned this to the hv who was shocked and asked another gp to see dd. She did and got dd a referral to the hospital. The hospital appointment wasn't untill dd was 12 weeks old and by then we had battled through the feeding issues and weren't having any problems. The paediatrician looked at dd's tounge and thought that it was so mild it was highly unlikely to cause any problems, but if it had of needed cutting she would have referred to a plastic surgeon. The paediatrician and I both suspected that dd's tounge had naturally stretched so was not as sever as when she was first born. However, this took 12 weeks and who knows a referral to a surgeon would have taken. So basically the answer to your question is try a gp but be prepared to have to fight and wait. If you can I would look at getting it done privately. This is what we will do with any future dc if they have tt.

minipie · 27/10/2013 17:57

Scout - good that your GP could diagnose it but Shock at telling you it can't be treated without general anaesthetic and not unless baby not feeding at all. What rubbish. Sorry to hear of your abscesses, that sounds horrendous, well done for battling through.

I think next time I will try hospital midwives first, then if they are no help I'll immediately go to the the private LC I eventually saw with DD. I already know my GP is rubbish about TT Sad

OP posts:
SayCoolNowSayWhip · 27/10/2013 18:10

Scout that's awful!

Should have said, although mine were diagnosed by NHS, we paid for a private snip second time as the waiting time on NHS was 5 weeks!

HumphreyCobbler · 27/10/2013 20:14

minipie the hv said there wasn't enough evidence to justify snipping and the midwife said that it was because there was no one available in the county to do it. I would have had to have got a referral from GP to be assessed and then sent miles away to a clinic and it would have taken ages.

It would have been the end of breastfeeding if we had gone down that route.

mawbroon · 27/10/2013 22:52

Agree with all your points minipie, DS1 could stick his tongue out and had good elevation (it was posterior), feeding didn't hurt, he did gain weight, just not very quickly and it took him all day to get the milk he needed to gain weight. I had never heard of TT when he was born, and nobody along the way thought to mention it...

Would also like to add that many HCPs focus on feeding, speech and licking ice cream cones Hmm

DS1 went undiagnosed until age 6yo. He had a long list of problems which I have since learned were related to his ties.

It can affect the whole body.

Scoutfinch1 · 27/10/2013 23:32

Thank you minipie, I'm just lucky that it seemed to stretch, I can't imagine what state I would have been in if it hadn't and had to wait that long. I think I would have had to give up. The waiting times are just shocking.

Mawbroon if you don't mind me asking what problems has it caused your DS? I'm just a little concerned about dd now and would like to know for future reference just incase.

LlamaAndOwl · 28/10/2013 09:11

My daughter was latching well and gaining weight but was feeding for hours at a time and very gassy. The HV suggested tongue tie and told me to take her to the local bf clinic. They referred us to a tongue tie clinic and the tie was snipped on the NHS about a week and a half later, when she was four weeks old. I did have a midwife tell me there was no tie and not to bother going to the clinic though - I just ignored her as I knew there was something not right. Seems to be luck of the draw whether you get someone at the NHS who knows what they are talking about.

Bakingtins · 28/10/2013 09:17

DS2 had anterior TT obvious to me on day1 and having BF DS1 knew he wasn't feeding properly. I had several MWs disagree with each other about whether he was TT or not, only got it sorted because I insisted on seeing the infant feeding specialist MW who snipped it there and then. There was another lady on the ward with a TT baby who had already swapped to FF because she had been told her baby would need "an operation" if she wanted the TT corrected Sad

mawbroon · 28/10/2013 10:02

Scoutfinch1 I am afraid you have been pedalled another myth by a HCP who does not know about tongue tie.

Tongue ties DO NOT stretch

A thin one might be broken by a spoon or toy in the mouth for example, but in general, they do not stretch. What happens is that the baby learns to compensate. This is not really good news because compensating can have a knock on effect -eg tension in the jaw/head from compensating can cause tension in the neck/shoulders.

You asked about the problems that ds1 had. The whole discovery about his ties (anterior, posterior and upper lip tie) started when he was around 5yo. He started complaining of burning in his stomach and being sick in his mouth. He was also very bloated after eating. I suspect that he had been suffering this for far longer but was only able to verbalise it at that age. He was put on reflux meds and when that didn't work, he was given an endoscopy which revealed irritation from the reflux, but nothing sinister.

I read on here about the link between tongue tie and reflux. We had his tie revised aged 6yo and the reflux stopped immediately. All great I thought, but the I joined a tongue tie group on Facebook and realised that there was a whole lot more going on.

He also has a high narrow palate. Many tied babies do, this is because the tongue shapes the palate in the womb, and beyond. If the tongue action is compromised, the palate can end up distorted. The high palate and his under developed mid face were restricting his nostrils so he was mouth breathing. He also had ENT trouble, with noise, congestion and hearing loss in his ears for several years. The high palate also restricts the eustacian tubes, making it difficult for them to drain properly.

I began to realise that his tongue tie had not been released properly (despite going to the paed surgeon who used to run the tongue tie clinic, which cost ££££££). It had been enough to relieve the reflux, but the back of his tongue was still tied. I took him to a dentist who had trained with Dr Kotlow, who is a leading expert.

The dentist had a look and identified several orthodontic problems which were becoming evident at age 7yo as well as the underdevelopment of the middle section of his face (not that you would notice unless you knew what to look for). His tongue was thrusting forward as he swallowed because it was unable to lift up fully during swallowing. This was causing an open bite, and an x ray showed that his 2nd inscisors on top were turning round because there was no room for them and without treatment, he would be looking at multiple extraction of teeth as a teenager. His bottom jaw was also bigger than his top, it should be the other way round. Mouth breathing is often the culprit for this.

Other problems which I learned were linked to the ties and high palate were terrible sleeping, with some apnoea, and recurrent gut problems. He was allergic to egg and intolerant to cows' milk and he had a disproportionate number of tummy bugs. There seems to be a link between ties and poor gut health, but as yet it is not fully understood. He had difficulty with some foods when weaning, and gagged on certain textures. He also swallowed things without chewing properly, I would find whole peas in his nappies for example. He rejected many foods and refused point blank to eat them. Coupled with his allergy/intolerance, this left him with a very restricted diet and at one point he was borderline anaemic.

So, we got the dentist to laser his ties (no GA, just some local anaesthetic, also way cheaper than the first revision, like 7 times cheaper!!), and started orthodontic treatment about a year ago, just before he turned 7yo. He has braces to expand his palate and lower jaw, and headgear to wear at night to draw out the middle section of his face. He stopped mouth breathing a while back and even with my untrained eye, I can see a massive difference between his mouth now and the models that were made of his teeth last year. He may or may not need fixed braces when he is a teen, but if he does, he should be able to avoid extractions.

The ear problems cleared up after the first revision (I suspect that the reflux had been causing gastric fluid to collect in his eustatian tubes) and he is a completely different child to the boy 2 years ago who was tired, pale and under the weather all the time.

Ties should be assessed on function and symptoms rather than appearance. That's where so many HCPs go wrong. They dismiss some as "mild" ties based on what they look like. It doesn't matter two hoots what it actually looks like, it's about how the tongue moves.

Essay complete! Smile

SayCoolNowSayWhip · 28/10/2013 12:28

Mawbroon, DS definitely has a high narrow palate. What do you suggest I do at this stage ? (7 months)

He has had his TT snipped twice but it has grown back. He also has a lip tie. He has bad reflux and certainly has tummy problems.

Is it worth trying to take it further at this stage?

minipie · 28/10/2013 14:34

Sounds like we need some more myths on the list:

  1. Tongue tie revision is an "operation"

Nope, it's a tiny snip, over in 30 seconds - if done early enough.

SayCool in your shoes I would be inclined to speak to Malcolm Levinkind, a dentist who specialises in tongue tie and uses a laser and local anaesthetic. Based in N London. (mawbroon is that who you saw?) There is someone similar based oop north but I can't remember his name sorry.

  1. Tongue ties can stretch

Babies may learn to feed despite a tongue tie but that doesn't necessarily mean it's stretched.

  1. Tongue tie is only relevant in relation to breastfeeding

Not always - see mawbroon's story. Not to say that untreated TT will always cause problems - I suspect it depends on the specific shape of your child's mouth, teeth etc as to whether it will cause a problem or not.

I would also mention that DD found it very hard to bottle feed, as well as breastfeed, prior to her TT revision. She gulped down loads of air and took forever to feed.

OP posts:
mawbroon · 28/10/2013 14:42

SayCool , yes a trip to either Malcolm Levinkind in East Finchley, or John Roberts at the Cote Royd Dental practice in Huddersfield (he did DS1 - a 400mile round trip worth doing)

Has the tie reattached? or was it possibly not revised completely in the first (and second) place?

Both of them are dentists and would be able to give you their opinion on the oral development as well as the ties.

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