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

(192 Posts)
mawbroon Tue 11-Sep-12 11:52:50

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 angry

madscimum Fri 14-Sep-12 11:59:04

I have tongue- and lip-tie. My mother tried to breastfeed me and stopped after three weeks because it hurt so much. While I was struggling through things with DD she kept saying that with such a sad tone sad I reassured her she had had no chance -- with my TT and the complete lack of knowledge back then she had done the best she could.

My father had a cleft lip and a cousin on my mother's side had a cleft palate, so there definitely is a genetic history of midline defects in my family.

EmpressOfTheGoldOceans Fri 14-Sep-12 12:22:34

I had one & was diagnosed at 11 by an elocution teacher. DM had been unable to breastfeed me & I had a load of speech therapy in early years at primary school, the elocution teacher was meant to be a last-ditch attempt to sort my speech out before starting secondary.
I had it snipped under GA & then went to the elocution teacher for lessons in how to talk properly.
Actually, the whole thing was practically worth it just for that bit - loved her, the talking lessons developed into acting lessons & were huge fun. But it would have been nice to have been diagnosed earlier. hmm

HappyAsEyeAm Fri 14-Sep-12 12:26:16

Yep. When Ds2 was born, the dr said he didn't have tongue tie and he was dischartged. The community midwife 5 days later said that he did, and that she would refer him to have it snipped at the local hospital.

Cue lots of feeding problems, me having a horrible time of BFing as he couldn't latch, and me stopping BFing by the time the appointment for the snip came through (6 weeks later).

Considering I had a horribel time BFing DS1 and stooped after 5 weeks or so, and then cried every day about 'not giving my baby the best' for months, I was very lucky not to have had serious PND or similar when I couldn't feed Ds2.

me! I asked about it in the hospital (both DH and I had TT as children) when I was finding breastfeeding painful. I was told "it's early days yet, you'll get the hang of it" and "as he can move his tongue forward, I think not" (He couldn't stick it out below his lower lip, but could push it forward a bit).

Lactation Consultant diagnosed him with a slight posterior TT - got him snipped at 6 or 7 days, and after a couple more days for my poor scabby nipples to heal, we've never looked back. DS2 is due at Christmas and if establishing BF isn't going smoothly in the hospital I won't be leaving without a gazillion opinions on the likelihood of TT!

artifarti Fri 14-Sep-12 12:56:42

Yes. DS1 was impossible to feed, dribbled it everywhere, I was red raw, he couldn't poke his tongue out. MWs said no to TT, HVs said no to TT, GP said no to TT. I eventually got a diagnosis at 10 weeks old from a very experienced BFing counsellor at the hospital after watching him feed for about a minute. He got it snipped at 14 weeks and things improved within a week.

mawbroon Fri 14-Sep-12 13:37:47

Hey! We made discussion of the day! A first for me grin

DD1 had a 'mild' TT. made BF very painful for me - for two months. All the MW's, HV's & DR's said she was feeding fine, latch was fine and it "wasn't hurting really" angry. I asked everyone I saw as it really hurt. No one even looked at her mouth. I had no idea what TT was (my pre MN days).

Finally, when she was 2.5 mo, a very experienced MW (who is also a friend & lives in another country) diagnosed DD with mild TT. Not long after this things sorted themselves out so snip wasn't necessary and feeding improved greatly. I think she just grew enough and matured enough to overcome it.

But I had 2.5 months of BF hell & endless people telling me I was wrong, she was feeding fine and it didn't actually hurt.

When DD2 was born I insisted everyone who actually saw us (MW's, Paed's etc) checked her for TT - thankfully she was fine.

whenwill Fri 14-Sep-12 14:21:23

Right, looked at midline issues and seems tongue tie can be linked to all sorts of other midline issues. DD has sacral dimple (line and two dimples not hole) and a long take folic acid til week 6.

Totobear Fri 14-Sep-12 14:39:07

Yup! Got it done privately but sadly didn't help our feeding issues, he just couldn't understand that my nipple was not a bottle teat. It was posterior TT and v deep so they weren't able to get rid of it entirely without op which I wouldn't have out him through just so I could breast feed.

Interestingly I was same as a baby.

Totobear Fri 14-Sep-12 14:41:13

Oh and the heartache and pain it caused on my part was immense!

Napdamnyou Fri 14-Sep-12 14:46:26

Diagnosed it myself at 6 months thanks to MN links and took him straight to private ENT specialist who snipped it with a local. Was told by midwives that he didn't have one, just a tight frenulum. Months of exhausted crying baby feeding so slowly round the clock, exhausted me, made his first half year almost unendurable.

Still BF now and he's 21 months!

thatsthebadger Fri 14-Sep-12 14:52:12

Me too. DD was TT so when we had DS 8 weeks ago I had it written in capitals on my birth plan that I wanted him checked for TT in the labour ward. He was. Twice. Once by a specialist midwife. We were told he had a minor posterior tie that would sort itself out during bfing.

5 weeks later I'd run the gamut of mastitis (multiple times) and thrush. Finally I noticed that he had a heart shaped tongue and wasn't sticking his tongue out. Asked a friendly mw to refer me on my say so (she never examined him herself). Eventually saw a surgeon last week who confirmed a significant anterior tie. He's due to be snipped on Monday. For the past two and a half weeks I've been exclusively expressing. Horrible time consuming process but I really want to get back to bfing if possible. Who knows if that will work as DS may well have lost the knack.

Livid that no HCP spotted it and even more angry it's taken over three weeks to get the snip. Breast is best NHS? But make it almost impossible to sort out a (minor) problem in good time? Brilliant! Thanks.

TheLaineyWayIsEssex Fri 14-Sep-12 15:06:51

whenwill do you have a link about other midline issues? My ds had PTT and am pretty sure he has a lip tie (big gap between front teeth and can see where it is attached) curious as to what other things could be related

Namethattune Fri 14-Sep-12 15:08:15

I was in hospital for a week after DD was born, and was having significant problems with bf, but not one person checked for/mentioned tt. I actually went to a bf clinic in desperation at 3 weeks, as I was in agony, and an NHS bf councillor looked in her mouth and said everything was fine. It wasn't until a private lactation consultant looked at her at 5 weeks that a posterior tt was diagnosed.

Tempernillo Fri 14-Sep-12 15:08:44

Me!

Tempernillo Fri 14-Sep-12 15:14:22

In my case she had a very obvious anterior one. Noone noticed it until I went to hv with feeding probs at about 6 weeks. Then I was told it won't be a problem by my gp. Eventually saw bfing nurse who agreed she wasn't latching properly and corrected it for me.

mawbroon Fri 14-Sep-12 15:39:42

Napdamnyou, unbelievable your midwife saying no tongue tie, just a tight frenulum.

Yes, tight frenulum.... otherwise known as.....tongue tie!

onlyaname Fri 14-Sep-12 15:42:00

My DD had TT.

A student midwife in hospital first noticed it. Paediatrician came along, stuck his finger in her mouth and when she sucked said it wouldn't be a problem. ( first paed who came to do checks didn't notice it).

Turned out it was quite a bad tie and I really struggled with BF; very painful, DD lost weight. I checked out Internet and was sure BF isses due to TT. Luckily anther midwife agreed with me and referred me to midwife within the trust who cut TT's. Day 11 went to see her and got it cut, breast feeding improved within about 3 days (carried on to 20 months!).

Midwife who cut it was great. Gave me lots of info. A couple of things I remember - they think it is passed on from the father and a study/ survey of newborns was done in Southampton area (might still be happening) that showed a very high incidence of tongue ties. From what I remember it was a massive study.

I was so close to stopping BF, really glad that it was first brought to our attention by the student midwife and that a midwife who believed me came to visit.

Tempernillo Fri 14-Sep-12 15:45:03

My gp did the sucking on finger thing only! Only thing that checks for is cleft palate. My bf nurse said that it diesn't matter how strong their suck is, if they have a bad enough tongue tie, they can't get nipple far enough in to the back of their mouth to suck properly. My dd sucked VERY HARD right on the end of my nipples. Ouch!

Tempernillo Fri 14-Sep-12 15:45:28

I meant to say to latch properly.

onlyaname Fri 14-Sep-12 15:49:03

www.ncbi.nlm.nih.gov/pubmed/15953322

Re the Southampton Study... Not an ongoing study by the looks of things.

More info on this online. Also search for Mr Mervyn Griffiths from Southampton Hospital.

onlyaname Fri 14-Sep-12 15:51:23

Tempernillo - my DD could suck hard too! Bloody painful it was. Just shows the lack of knowledge about tongue ties. Sucking does not equal a good latch.

Poppet45 Fri 14-Sep-12 16:04:40

Two more here. DS still has his posterior tongue tie, aged 3, as it was only discovered this year and it has affected his speech to some degree. Mind the HVs and GPs missed his refluz and dairy intolerance too so their incompetance in this wasn't particularly startling. DD was in hospital for 9 weeks after being born 3 months early and came home BFing, but countless neonatologists managed to miss hers despite my nipple being chewed into quite an unusual shape, and her having the most appalling refluz she'd go limp and blue around the lips during feeds as she choked so often, and then they were wringing their hands about whether to do anything about it. My current HV who is brilliant, got me an appointment that day. The hospital's belated referral arrived about three months later. She also has a top lip tie. I think both ties are supposed to be there as scaffolding while babe's mouth is developing then both are supposed to disappear during the final stages of pregnancy - hence lots of prems have them quite badly.

walrusmoustache Fri 14-Sep-12 17:29:59

My DS had one, all HV and MW who looked said he didn't, pain when feeding was down to poor latch, then excrutiating pain in boob was thrush (it wasn't). Feeding literally all the time, falling asleep constantly when feeding cos it was such hard work to get the milk, couldn't stick his tongue out, milk dribbling out of his mouth when feeding.
I kicked up a fuss, demanded to see a specialist and saw LC who diagnosed his tongue tie within about 30 seconds, cut it there and then at 5wo.
Apparently it can run in families? I had one too.

whenwill Fri 14-Sep-12 17:38:29

laineyway no one link Im affraid. A site forum called 'mothering' came up a lot on all these issues. oh hang on (sorry one day i'll learn links):
http://www.pediatricsconsultant360.com/content/what%E2%80%99s-your-diagnosis-2?page=0,1
and http://www.mayoclinic.com/health/medical/IM01047

... that picture is like dds sacral dimple but google has way worse ones that come up in images.

Head thing is called corticostenosis and is when some of the head plates join. i don't have diagnosis of this btw but her head looks a lot like the google images for the sagittal version.

(my previous post also meant to say i didn't take folic acid until week 6).

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