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

elliebug, as mentioned earlier in the thread, Cote Royd dental practice in Huddersfield are doing laser revisions.

madscimum I could have written your post word for word about ds1. Except I didn't know he was tt at the time.

Everyone told me "but babies feed all the time" whenever I asked if it was normal.

Like you, I fed him whenever he seemed to need it and it was often up to 16hrs on the breast in a day

Madscimum - same as comment above, that was completely my experience too and I also kept asking the question - is feeding continuously normal and all mw and hv said yes it was and also being a first time mum, just believed them not having heard of tt.

wow, reading this I realise how fortunate I was that my sons tt was picked up at 3days old (due to problems latching on and serious engorgement - cabbage leaves all the way!) Had to wait 2 days for appointment as local hospital didnt have anyone who could cut it. 14 months later 2nd son was born and I asked what chances of having a tt was - told no higher than any other child, I asked midwife to check it as soon as he was born, yep another tt this time more extensive then ds1, cut the next day, again had to go the other hospital for it.
I still get people that look at me blankly when I mention that they had tt but I've got used to that now.

All 4 of mine had TTs. I'm not sure any of them were diagnosed by anyone but me, but when pointed out, Dr's Hvs etc all agreed with me.
I had no trouble feeding, they all gained weight and none of them were snipped.
They all fell over and broke their ties by the time they started school.

Yes, told by several breastfeeding counsellors and the hospital infant feeding coordinator that my DD definitely didn't have TT. She did. Still that it took a private lactation consultant to finally tell me why I couldn't breastfeed without being in absolute agony. Thank god someone finally spotted it though. I wish there was more awareness about this.

The position about detecting and treating tongue ties makes me just furious.

DTS1 has a tongue tie. He was prem and no-one mentioned that he had a tongue tie to me, despite being checked by several paeds because he was borderline for going to SCBU. Feeding was always painful, although I eventually mixed fed him for 5.5 months. I could only get a decent latch in rugby ball position despite lots of help from the BF peer supporters in hospital (who also didn't mention tongue tie). I just assumed the pain on bfing was normal. He gagged on solids for ages and really struggled with lumps.

I eventually realised he had a tongue tie when he was just under 3 because his speech was appalling and was doing some googling and it came up as one of the causes of speech problems. He was already in the NHS system for developmental delay and under speech therapy but they hadn't picked it up either.

I went to the GP who referred to paeds. Paeds bounced him to community paeds as he was already being seen by them. Community paed agreed he had it but refused to do anything about it as he didn't feel it was affecting his speech. Speech therapist also didn't think it was the cause of his speech problems and said there was no evidence that cutting it would improve his speech. We left it for a while. Until last summer when the speech therapist attached to his school mentioned it to me. She thought it might help his speech to have it cut but she couldn't say either way. She said NHS generally won't cut it now because of funding issues. His speech is still very unclear but he can make the sounds that are normally affected by tongue tie. However when he puts it all together his speech becomes unclear. He can't clean around his mouth and he can stick his tongue out to his teeth but no further.

So we have now got GP to refer us to an ENT surgeon. Fortunately I get medical insurance through work and they are going to cover it. I am interested to hear about the laser surgery - but we are in London. Is there anywhere else that does it?

The story doesn't end there, having had one child with it, I was more alert the next time round. DS3 turned out to have it as well. Not picked up by paeds, midwifes or nurses in SCBU where he spent several days. I couldn't get him to latch on more than a second with it being pure agony. Put it down initially to him being prem and little. When I realised he had it at 5 days, I spoke to the midwife who was incredibly dismissive and said "oh yes, he may have one, but they won't snip it around here anyway..." I found a private lactation consultant who came to my house and did it. We never did get the hang of bfing, despite her help but at least he won't have the potential speech problems that his brother has.

And I think I may have had a lip tie as I had an operation when I was a child to remove some tissue from between my top teeth so that they could be pushed together.

Why don't they routinely check for them??? Makes me so

There is a dentist in London waiting on his laser equipment and should be up and running soon AFAIK Loueytb3

Do you know who the dentist is or how I can find out?

I actually envy those whose newborns ate all the time. DS shut down to conserve energy after the first 3 days of constant sobbing for the breast. I was complimented on how easy he was. Then he was weighed.

:( perfectstorm.

madscimum - I did get breaks between feeds, but each feed lasted for a minimum of 2h. I could only feed DS lying down, it was the only way he could do it - so I spent an awful lot of time in bed. When the home visit MW came to see me after 5d, she asked how long feeds were taking and that was another factor in expediting the paed referral - 2h is way too long. After the snip was done, it took a while but eventually DS got down to the far more normal 30-45mins. And the pain reduction was fantastic!!

It's such a tiny operation when they're newborn, I can't imagine what the funding issue is (except paed time, I suppose) - a sip of sugar water, a dab of novocaine (dental anaesthetic) and a pair of sterile scissors - took 2 mins to do it. As opposed to waiting, finding out at 3 that speech etc. is affected and then needing a GA, theatre time, far more medical care and attention - it's madness!

Still counting myself VERY lucky to have had a good hospital where DS was born.

madscimum yes,exactly our situation!

Sobbing exhausted baby who soon became totally overtired - literally feeding all the time - painfully, for both of us - never getting enough sleep, or milk. Grim.

perfect storm :(

My ds1 had a tongue tie, not spotted till he was about a year old by an slt. I mix fed him from 3 weeks because of pain feeding

Ds2 was never diagnosed but I'm pretty sure he has a posterior tie. Managed to feed him till 16 months but it hurt for the first 5 months on and off.

Now feeding ds3, have suspected posterior tie but none of the HCP's I've asked have diagnosed it. I asked a lady who was checking him over in hosp of she could check for tongue tie and she said they only check for that of baby not feeding at all

Loueytb3 his name is Dr Malcolm Levinkind and if you google his name you will find him we're waiting on him, as the round trip to Huddersfield is just too much for us.

Just caught up with this.

We didn't know our second DS had tongue tie until his dentist asked us if we had thought about having it treated - this was about a year ago when he was 7.

We had wondered about the issues he was having speaking clearly and enuniciating some sounds but weren't sure if it was something he would grow out of with practise. We had noticed his tongue was less mobile than his DB but hadn't realised how much this was affecting his speech.

The dentist (who only treats children) is very experienced with tongue tie cases and has a partner who carries out the operation. She doesn't recommend it before children are about 10 (if it hasn't been dealt with when they were new born) because of the changes still occurring in the mouth until then and because of the stress/psychological challenge for a young child having this sort of procedure.

I now realise why he was more difficult to breast feed than DS1 - rather too late!

If anyone wants details of the dental practice please PM me - they are in central London and cover orthodontics as well as standard dentistry for children and I have been very impressed with them.

Thanks lookout

Mummyinthedark 10 is a long time to wait to have the op if you are struggling with speech problems. They then have to relearn how to talk.

I agree that 10 is a long time to wait. As well as speech problems, tt can also affect craniofacial development which is pretty far on by age 10. IIRC, craniofacial development is something like 90% complete by age 12.

DS1 just had his tt done with laser last week under local anaesthetic and coped just fine with it (he is 6)

The iPad just ate my long post, but perfectstorm, really sad for you.

madscimum, your post is ringing bells here. No diagnosis for DS as yet but I am getting a referral to a paed who hopefully will be able to confirm tt; or at least I hope so because that is more and more what it is feeling like to me, esp given DP's tt and the fact his mum wasn't able to bf him though she'd fed both his brothers beforehand, and one of his brothers has a cleft lip, ie a midline defect. (Of course the GP we saw this am about the referral was pretty dismissive of DP's tt, which made me a bit cross.) Let's see...

Bump, anyone else?

Yep

mawbroon, thanks for the info on laser. DH has agreed to get it done, when he's been adamantly opposed to general (understandably). And I would like them to take a look at DS' lip, too, because he purses a lot and to my very inexpert eye (could never see an issue with his tongue one either, whereas medics grimaced) his top lip frenulum looks tight.

I'd never even heard of a lip tie. And given the othodontic and breathing issues DH has had, and that my DS isn't quite 4, I really, really want to get it looked at when he's so diddy. I am so very grateful. I can't say how much, but with a child with a tt, you will know what this info means to me.

And thanks for the sympathy on DS's first weeks to people, too. I honestly don't think about that time at all any more, but it makes me shudder when I do. I so hope the campaign does happen next year, and that it helps avoid so many other babies and women being in our shoes.

Just a quick update - went to see a tongue tie specialist today, finally, and got action at last - DS has a 25% posterior tongue tie, with significant enough impairment that it was definitely worth snipping - now done. That's in the wake of 2 midwives and 1 GP telling me that he didn't have a tongue tie, ho ho. First feeds after the op went well, he's been grizzly some of the time since then and didn't enjoy either bottle or breast feeds this evening, but has fed well overall. And he is sleeping so he can't be vastly uncomfortable...

I really owe you guys on this thread a massive vote of thanks for writing about it, especially the experiential post of madscimum, which rang enough bells that I had to take it seriously and investigate it properly. Hopefully it'll be onwards and upwards with breastfeeding now!

Good news comixminx

Any recommendations for private people/places to get a tongue tie cut? I'm in Bucks but happy to travel within the southeast. Have found a few places on the internet (one in maidenhead, one in windsor) but would prefer recommendations!! It's a very obvious 75% tie.