Tongue tie?

(31 Posts)
cloggal Sun 16-Mar-14 14:55:47

I've no idea where else to post this, hoping someone can help...

Backstory: DS and I struggled in a big way with breastfeeding - I was absolutely certain (and still am) that his latch was in some way incorrect. I was in searing pain every time he came to the breast, to the point where a midwife commented 'your shoulders are at your ears', and pushed them down because I was braced so hard. I had cracked, split and bleeding nipples after only two days. His latch was checked by two midwives, two auxiliaries, and a lactation consultant, all of whom suggested techniques but said it was basically fine. The lactation consultant checked quickly in his mouth too. He dropped an alarming amount of weight on top of already being in SCBU, we ended up mixed feeding for the first few months and then when my supply petered out, having never really gotten off the ground as a result of all of the above, he was formula fed. I found all of this a bit sad, but he is healthy and thriving - something he wasn't in the early days.

Cut to yesterday evening. He is now nine months old, standing and crawling around - a typically active little boy. He was crawling over to reach something, lifted both his hands at the same time and so knocked his chin off the floor, not hard but enough to frighten him and it was probably a little sore. Of course, he wailed and I soothed him - I saw a tiny dot of blood on his lip and thought 'oh no, he's bitten his tongue/lip' but I couldn't see any evidence of any cut in his mouth and he soothed quickly. Today he has been more vocal than he ever has been, and is sticking his tongue right out (something he has never really done beyond his lip) and seems to be revelling in showing it to me!

Am I being totally mad, or could he have split a tongue tie when he knocked his chin? I have long suspected there was something off with his feeding, and at mealtimes he didn't always find it easy to manipulate food (can do it easier now there are a few teeth!) What, if anything, should I do about it?

Any help appreciated, or even just brew and cake...

cloggal Tue 18-Mar-14 20:39:48

maw the idea that some docs think that makes me want to strap a TT baby to their nipples and watch as their faces contort in the most horrendous pain. Utter rot. I am so pleased to hear though that you were able to EBF and that it was (relatively) trouble-free even if it was through total negligence on the part of the HCPs! smile I honestly found BF more painful than my induced labour. I thought someone was sandpapering my (ample) breasts right off my body, with something the size of a nail file. The burning sensation makes me feel sick just thinking about it... and the pink milk.

We were watched pretty carefully because DS was already ill, so top ups began swiftly, but was told in no uncertain terms that no advice on how to formula feed could be given. I had to get my smartphone out! I remember someone else on here saying something similar and wondered if it was the same hospital but we were at opposite ends of the country!

Nicky you've got every right to feel touchy, such a personal thing. I was for the first few months, especially when a well-meaning visitor declared that 'everyone can breastfeed', whilst I was sitting feeding DS with his bottle, with my supply having dried up. She was genuinely trying to show support but I was just so defensive about it - and had to count to ten before explaining my reasons, which I've never done to anyone IRL since.

I am now a bit unsure about whether to wait and see what happens with my DS, or get a second opinion just to be sure, but that may be my totally neurotic worrying nature. Very, very strange that such a minor thing isn't just dealt with when they know it can have such a serious impact.

NickyEds Tue 18-Mar-14 15:43:52

They were actually very quick to tell me to top up-i think the MW thought I didn't have the stamina to BF. It was the lactation specialist at the hospital who referred DS after I said that I wanted to stop BF.
I can believe some doctors don't think it interferes with feeding. So little is known about it - it never came up during the BF talks when I was pregnant. Should go on the "list of things they don't tell you about BF" along with bleeding nipples!!
DS is thriving now and I have sort of made my peace with it-although I can be a bit touchy about it!!! It's just upsetting when the procedure DS had to snip Tt was sooooo quick and easy- he cried far more at his heel prick.

mawbroon Tue 18-Mar-14 13:14:08

We managed to EBF, but it was mostly because nobody actually bothered to find out how we were doing. I was pretty much left to it in the hospital and I had a different MW every day at home because mine was on holiday and all they just brushed me off when I said he was feeding all the time, saying that new babies feed a lot.

By day 10 or so, he was still 12% below birth weight, and I have no idea how low his weight actually dropped. He took about a month to regain birth weight which again they weren't bothered about.

I do think that if they had paid more attention, somebody might have said we had to top up which would certainly have caused problems, so sort of in a way, our EBF was saved by lack of decent care!!

I think they were oblivious of the problems because I wasn't sore. Sheer good luck really that it wasn't sore because I know I could not have handled the pain that I hear from some mothers of tied babies. sad

The whole situation is just a bit shite really. sadangry There are even some docs who believe that tongue tie does not interfere with feeding hmmhmm

cloggal Tue 18-Mar-14 13:05:29

Nickyeds, the diagnosis and snip aside - I could have written that post. We were topping up very early on and even that was frowned upon, but because his latch was 'perfect' no one had any other ideas angry

As I say though, as much as I'm sure it did cost us ebf, I made peace with my decision quite early on when I saw how much weight he'd lost and how poorly he was. You've gotta do what you've gotta do... And that's why I keep well away from most bf v ff threads, it's just not that simple sometimes!

NickyEds Tue 18-Mar-14 12:57:54

He was actually snipped on day 17- by which time I'd started topping him up with formula(on the MW advice) . No idea why they didn't do it earlier- they just kept on telling me that the latch was fine and that I should take paracetamol for the pain. After the snip feeding got much better but he'd had bottles, my supply was effected etc- I mix feed him now and still feel that it "cost " me exclusive BF. It does seem counter productive because as you say cloggal MW and health authority were very pushy about BF then were reluctant to do one easy thing to make it more straight forward.

mawbroon Tue 18-Mar-14 12:55:03

They did give a reason for not doing it at The time but I can't remember what it was! It might be in site stuff. I will have a look for it.

cloggal Tue 18-Mar-14 11:51:28

angry

That's awful Nicky.

I'm pretty sad MN don't think this is campaign-worthy, it affects a fair amount of us, and given the heavy BF promotion (which I'm in support of, but which can make people like me feel really rotten, sometimes because of ties!!) surely this is a good fit? I think this could really help BF numbers not to mention awful stories like yours Maw and others on that thread sad

mawbroon Tue 18-Mar-14 10:47:28

Why did they make you wait 14 days? If it needed snipping on day 1 then it wasn't going to disappear! No wonder so many women stop breastfeeding when in this situation. [Sad]

NickyEds Tue 18-Mar-14 09:56:48

My MW was great! - she said "that needs snipping" on day 1. So did the MW 14 days later when DS was still losing weight despite endless agonising feeding. So did the nurses in the waiting area to get it snipped!!

mawbroon Tue 18-Mar-14 08:45:37

We asked MN to do a campaign at the time of the thread that I linked to there, and they said no.

cloggal Mon 17-Mar-14 23:13:17

Totally agree Maw. After seeing another thread on lip tie, I really think training and standard checking should be and MN campaign.

Nicky, when I think of the weight my (already ill) DS lost in his first few days, this is when I get angry about it not being picked up sooner. Well done that midwife!

mawbroon Mon 17-Mar-14 22:25:10

I absolutely agree that it should be a routine check. But the midwives/HVs/paeds etc would need to be properly trained in identifying it.

I would not want this lot doing the checking!!

NickyEds Mon 17-Mar-14 21:29:03

Maw- how terrible for your poor DS- what a nightmare. My DS Tt was actually spotted by the midwife who delivered him- when he did his first big cry. They worked on a "wait and see" process so it was snipped when he failed to gain weight-I was expecting some major procedure and was shocked when it took 30 seconds. I really can't understand why HCP aren't better trained to spot it and why they aren't just sorted-they are so much harder to deal with in even slightly older children.

cloggal Mon 17-Mar-14 20:30:11

Sorry, you, not your DS (long day!)

cloggal Mon 17-Mar-14 20:29:33

Thanks Empress - I will, sorry to hear your DS had trouble too.

Speech therapy here too, I had mine diagnosed and snipped at 11 after years of speech problems and then had to have lessons in how to talk properly. If your DS has any difficulty talking, make them finish the job!

cloggal Mon 17-Mar-14 18:16:10

Maw, that is a terrible story, your poor DS sad Well done for staying firm on his behalf - the fact that he is doing so well is a testament to you both.
It just goes to show that mums often do know best. I know ties aren't perhaps massively common, but even 4% is a huge amount of babies every year, you would think someone could look into raising awareness and perhaps making this just another one of those 'tests', like the hearing one or reflexes. I've no idea whether this will be a big issue or not for my DS - but can't help but feeling that if he'd been checked thoroughly at an early stage his feeding would have been much better, and I would at this stage be at least far better informed (if he hadn't already been clipped).

mawbroon Mon 17-Mar-14 14:16:36

I'm not surprised to hear that nobody looked at it as a baby.

Sad but true - most HCPs are woefully underinformed about ties and the problems they can cause. At best, you might get one who knows about the effects on feeding and speech, but very few have in depth and accurate knowledge. Also, many "judge" the severity of the tie on how it looks. Appearance is irrelevant. It is all about how the tongue functions.

I had to dig and dig to find information to help ds1. All the docs poo pooed me when I said that his problems were related to his ties and high palate. I had to seek out people who understood. What really annoyed me was that we saw one specialist for gastro stuff, another for ENT problems plus the audiologist, a dietician for his fussy eating, a general paed for his anaemia, dentist re palate etc etc. No joined up thinking sadangry

He's 8yo now and was revised and got a brace around a year and a half ago. He is a different child. Every single problem has been resolved.

cloggal Mon 17-Mar-14 13:53:49

That's so helpful mawbroon, thank you for taking the time to share it and inform me a bit. I feel like it should be one of the routine checks they perform on babies, how much heartache could be avoided. I'm so sorry your DS (and you!) had to go through that. The doctor said this morning he does have a tight frenulum but the tear has slackened things a bit, there may be more tears to come. She didn't seem to think it was a severe case but was surprised no one had investigated further when I was having feeding problems.

mawbroon Mon 17-Mar-14 13:39:57

Also, look out for things that you would never have dreamed were related to tongue tie:

-gastric problems
-speech problems
-poor sleeping
-difficulty with chewing and swallowing, fussiness with food
-ENT problems
-dental problems (too early yet, although his palate shape could be affected)

DS1 had undiagnosed ties until he was around 6yo. He has been through the wringer (and me!) because of it. His whole orofacial structure was affected by it which had a massive impact on his overall health. Nobody ever checked for tongue tie, and I'd never heard of it back then, but I'm sure his would have been missed because he had great lift in his tongue and could stick it out really far. It was the back of his tongue that was tied down.

Of course, as with anything, there is a great variation in the problems that ties can cause, ranging from virtually none, to those that I list above. You need to bear in mind that although the rip seems to have helped him stick his tongue out, the frenulum may still be tight, or there could be a posterior tie as well. And yes, ties are highly hereditary. Both my DSs have them, but DS2 only has a fraction of the problems that DS1 had.

And btw, yes I can believe the 9hrs feeding sad DS1 often would spend up to 16hours out of 24 trying to feed. We were lucky though, he didn't hurt me when he fed and he went of to nurse for years (and years) after the baby stage.

cloggal Mon 17-Mar-14 12:58:17

I didn't know that addicted. I definitely will, only wish i'd known more with DS!

Sounds like a tie to me.
If you have another baby, look very carefully for a tie.
Apparently it runs in families (both my boys had ties)

cloggal Mon 17-Mar-14 12:48:22

NickyEds - I once switch fed DS for nine hours. Nine. And he was still hungry. And no one believed it had been nine hours. I hadn't even gone to the loo!
Sad that something this simple might have made a real difference, but who knows - and I'm at peace with my decision to mix and FF, genuinely don't think he would have left hospital without it. I'll be keeping an eye for anything else now I've had my suspicion confirmed.

cloggal Mon 17-Mar-14 12:45:13

Update - took him to see the HV and instead saw GP - he does have a bit of tongue tie, his frenelum is tight and there was a little tear in it, so that explains the blood.
DS is absolutely fine so doctor was keen to stress he didn't need it snipped, but that we should keep an eye out for any problems. It does make me a bit angry that it wasn't picked up before, perhaps BF would have been a much better and nicer experience for us both, but at least now we know! Thanks for all the reassurance! He is sticking his (now very long!) tongue out now...

NickyEds Mon 17-Mar-14 09:01:07

I think that the doctor was making an off hand comment about the ice cream. My OH was Tt and didn't have it snipped and had to go to a speech therapist when he was little- I do realise there's more to it than ice cream!
cloggal- LOADS of MW and HV said that DSs latch was fine and I think that they didn't believe me when I said I was feeding him so often!! One lactation consultant said that most Tt "right" themselves but I'm glad DS got his snipped as I'm not convinced of this. It's good if your DS has and can manage his food easier now! I wouldn't have thought you need to do anything though-if he's happy enough.

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