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Infant feeding

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

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

191 replies

mawbroon · 11/09/2012 11:52

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

OP posts:
perfectstorm · 15/09/2012 00:29

Oh, and yes, DS also has a sacral dimple. However I've googled and not found a single medical study linking midline developmental issues with folate, specifically excluding neural tube defects. And one study that ruled such a link out.

I was told there's a genetic link, though. And my DH has a terrible tongue-tie, too.

Thumbwitch · 15/09/2012 00:37

Me. I asked them to check because DH is tongue-tied and I know there's a chance of it being passed on - the first 2 HCPs who visually checked said no. The BF expert who came to see me because DS was having troubles latching on, ran her finger under his tongue and said "yes, he has a small TT". It was snipped when he was 2wo and despite only being a partial, it made the world of difference to feeding.

Juggling, he also had the tight top lip frenulum - I asked the doc later, when he was a few months old, if it would be a problem and they said it was doubtful - but then when he was 2, his cousin kicked him in the face by accident and tore the frenulum so now it's free anyway.

I've to keep an eye on him though - 2 out of 3 tight frenula might indicate the third one, on his foreskin, may prove a problem as he gets bigger too. DH was circumcised after birth so we have no indication whether or not he would have had a problem himself there.

DS also has a small sacral dimple BUT fapl - I'd been taking Pregnacare (so including folate) for months before falling pg with DS - I don't think it's linked, I think heredity has a lot more to do with it. Hope that makes you feel a bit better :)

lookout · 15/09/2012 09:26

ReshapeWhileDamp Get yourself on to the tongue tie support group on facebook. There is a wealth of information in their documents section about undiagnosed and unreleased ties that could really help you. It's very helpful to have all the information in one place! Also try Dr Kotlow's website - he is the world's authority on tongue/lip ties and has written several medical articles about them. Ds2 has a lip tie too and we are currently deciding when/if we are to get it cut. Good luck!

Just to add, ds2 had tt at birth, but after a couple days of excruciating feeding, my NHS breastfeeding clinic picked it up and sent us for revision (they messed it up, but that's another story!).

ophelia275 · 15/09/2012 09:29

My ds2 had a severe tongue tie diagnosed after about a week by visiting midwife. The wait for the operation on the NHS was about 8 weeks and because I wanted to breast feed we decided to have it done privately and paid £150 for the privilege by a specialist midwife. All was ok.

whenwill · 15/09/2012 10:10

good to hear about folic acid. what study ruled it out perfectstorm? my thought process went: spina bifida is midline issue and sacral dimple can be (not always) linked to sb and folic acid certainly plays a role there. and sacral dimple linked to tt. More studies should be done then?

Maybe a genetic link to how somebody absorbs, processes, uses etc. folic acid? It does seem to be true that those with sb need an extra hgh dose of folic acid during pregnancy, as they have more sb suseptible genes (true for other midline stuff?). Folic acid supplementation does not 100% rule out spinal bifida occurance.

Dd's liptie and dimple seem a bit of a mystery genetically here though maybe tt- not sure.

though is all this more common now than before folic acid supplementation??

MumOfTheMoos · 15/09/2012 10:17

That's interesting about maternal age and TT. My mum had (according to my nanny) one of the worst tongue ties that the mw had ever seen. In 1942, the mw dealt with it there and then. My nanny was 40 when she had my mum.

I was also 40 when I had ds - he had a 'medium' TT - apparently!

BertieBotts · 15/09/2012 11:00

How bizarre, I have a very very slight sacral dimple, and I think I must have had a slight tongue tie too because I tore my tongue frenulum as a teenager Blush during a rather vigorous kiss! I have a gap between my front teeth as well but don't think I have a lip tie.

perfectstorm · 15/09/2012 11:27

Whenwill, here's the study. There's also one on oral clefts, that finds the same thing. I've seen something that says 2 of 7 studies think there may be a link to clefts but 5/7 are to the contrary. In a sense it doesn't matter much, because supplementation is essential for neural tube reasons anyway. I mean, non-neural midlines aren't the issue spina bifida is. Maybe the bigger issue is why we don't automatically supplement bread, as I understand is done in the USA (?). Perhaps there is a reason I don't know of.

DS had one of the worst tongue-ties the surgeon (Mervyn Griffiths, who wrote the study the WHO now rely on in advising division - the procedure had fallen out of favour for some years before he began to perform it again, and in fact he was reported to the BMA by a couple of irate colleagues...) had ever seen, even after the failed initial cut. It turned out that the tie had been so severe that his tongue was restricted even after division, and only a few months of eating solids, and thus using the tongue constantly, altered that. For the first months of eating he had to use his hands to remove food he didn't want to eat - his tongue couldn't do it. He also has a double frenulum, so it looks like this: () under his tongue now, post-division. His father has a severe tongue tie too, which was never seen to. And I supplemented with folic acid before and during pregnancy, incidentally. It didn't stop it happening.

Obviously my own situation is just anecdotal and nothing more, but I am concerned to see women in this thread worrying and blaming themselves, when there is no strong evidence that they need to. I was folated to the gills, but it didn't help this. DS has a sacral dimple and a severe tt. So does his father. Don't rule out genetics, because one of the first things I was told was that if a parent has a tonguetie then the odds are about 1 in 4 that a baby will, too.

Some0ne · 15/09/2012 12:18

DS was a terrible feeder from the start but it was put down to brain damage. After a couple of weeks I pointed out to the doctors (he was still in the NICU) that he had a tongue tie; they admitted that it might be causing the feeding problems but no-one in that hospital would cut it. He was referred to another hospital but the waiting list was very long, so he was only seen there last week (he's 7 months now). They've said they'll cut it but because he's so old they want to use a general anaesthetic, and because he has heart problems they can't do it till they're fixed, so he'll be at least 11 months when it's done.

perfectstorm · 15/09/2012 12:24

Incidentally, if anyone is facing problems with their Trust and division of a TT, Mervyn Griffiths at Southampton will cut it if if a cheque (was £100, which was less than I'd paid the useless lactation consultant!) is given to his Trust. That Trust will seek to bill your own local one, and if they succeed, your cheque is returned to you. But as it's officially a private appointment, there's hardly any waiting list. I was seen 5 days after contacting them. (And my Trust did pay, so I got my uncashed cheque back).

My local Trust only had one guy who could cut it, and he'd been on long term sick leave. The relief of having it done was huge, even if it didn't work.

For the record, Mervyn Griffiths was wonderful. He's dedicated a lot of his professional time to helping women with TT babies feed, but he gently said to me that when he was a baby, it was thought formula was better than breastmilk because babies gained weight faster, so that was all he'd been given. And he was a healthy, academically successful adult regardless. He was so lovely, and again an example of the great people who can and do work in lactation advocacy. He was very supportive of women who think formula is the best option for their families.

whenwill · 15/09/2012 13:45

Sorry, i didn't mean to make anyone worry. tt and sacral dimples are so common (it seems!) and are not life threatening or anything. I just thought since there are so many of us in one place it might be worth comparing. I read about the maternal age thing too.

Ann Dobson cut dds in London at 7 months cos local nhs wouldn't do it over 3 months. Ann also trained ?under/around? Mervyn Griffiths. Was not as bad cry as injections, then happy, normal, ate tea etc. calpol/ibuprofen for 2.5 days as was grumpy/uncomfortable sleep. wasn't expecting much at this ages but.

No great expectations cos of age but mouth opened wider in first few days, then night latch improved (head back and nose clear of breast tissue) and now (3 weeks later) i would say about 80% of feeds I cant feel bottom teeth and she stays on at the start (was always on/off before) and seeks out breast and sucks for comfort so much more (bit of a pain actually cos im not used to it!). Breasts also seem softer and rarely feel letdowns since (don't know what that's all about).

mawbroon · 15/09/2012 14:34

A few people have mentioned needing GA for older babies. Just to let you know that Dr John Roberts at Cote Royd dental practice in Huddersfield does laser tt division without need for GA.

DS1 is almost 7 and we got his tongue and lip done there the other day.

Genetics at play in our family too. DH has posterior tt (only twigged this when I started looking into it for ds1). DS1 had anterior and posterior tie and also a lip tie. He also has a high palate and associated dental problems and he is starting the first phase of orthodontic work next month. DS2 has lip tie and tt, but he doesn't have the high palate or any of the other problems that ds1 had, so we are just leaving it.

Did you know that allergies/intolerances are also linked to tt? Gut problems are common with tt (reflux for eg) and it is thought that a leaky gut leads to various problems, including allergies.

Sad and Angry at the trouble that people have had getting tt identified. And I bet there is much more of it around than we currently realise.

OP posts:
Thumbwitch · 15/09/2012 14:48

mawbroon - do any of your TTd males have foreskin issues? Would help me to know if they do, please.

perfectstorm · 15/09/2012 14:58

Mawbroon, you don't happen to know if that can be done on adults, do you? DH has never had a division because the risks of GA outweigh benefits, but it might be worth it IMO if local is all that's required for laser.

perfectstorm · 15/09/2012 15:00

And DH has had shocking orthodontal problems plus a rhinoplasty (which failed) to sort out breathing/rhinitis. I'm planning on getting DS' teeth looked at by an orthodontist when he's 5 or so as the earlier they can get an idea of what treatment (if any) is needed, the better.

ClimbingPenguin · 15/09/2012 15:06

DS is TT and LT but as he is nearly a year old with only minor feeding issues I'm not sure whether to do anything or not. Am on the fb group but still as confused as ever. Waiting for the London clinic to start and then I could have a consultation as it's the dental stuff I'm mostly worried about atm. Also I just want someone to confirm he has TT/LT but everyone seems reluctant to.

mawbroon · 15/09/2012 18:28

Thumbwitch dh is fine, ds1's hasn't retracted yet, he is almost 7 so I don't know if it should have done by now. DS2 is 2.5yo so I haven't looked at his yet. Sorry, probably not very helpful! I do wonder about ds1 though because his sort of balloons a bit when he pees.

perfectstorm yes as far as I know, he will do adults as well.

OP posts:
MoJangled · 15/09/2012 18:45

Really interesting thread.

Like many on here, DS had undiagnosed tongue tie which, despite me asking 7 different MW/HV/docs for help in first 2 days wasn't picked up, even when we were admitted day 3 via A&E, baby almost in coma for tube feeding. Took another 3 weeks of horrendous struggle and mastitis before snipped, then exactly 12 hours to reach completely new, lovey, BF phase and healthy baby.

DH has one too - unclear speech and can't snog, so laser info above is very useful. (Although he's sensitive about hs speech and I've never mentioned the snogging so I'm not sure whether to raise it!)

The question is WHAT SHOULD WE DO???? A similar thread last year was referred to Mumsnet HQ as a potential campaign - I really feel that this should be dealt with better and would put time into pushing for it, if anyone want to join me? I dont know how campaigns work on MN though...

Namethattune · 15/09/2012 20:21

I'd be up for a campaign. The NHS seem woefully ignorant on tt, especially considering the feeding problems it causes. If they want to push the breast is best message then they need to understand anything that can interfere with bf!

FrozenNorthPole · 15/09/2012 20:28

Food for thought on this thread. We were referred for tongue-tie division when DS was 4 days old. It's been two weeks and we've not heard anything. We think he might have partially divided it himself but I really want to see the consultant to get it properly seen to. Really frustrated as although I think DS is doing okay with feeding, I know he could be doing better. And it would be great not to have to do the exaggerated latch all the time ... ! Not had him weighed for a week and a half either as health visitor turned up early to our home visit and I was still out doing the nursery run, so really hoping that he's getting enough to gain weight. I know for sure that if I wasn't a veteran breastfeeder, I'd probably have moved to expressing bottles by now. Beyond cross with the HCPs I've seen at the moment Angry

mrscobweb · 15/09/2012 20:31

ds spent first 3 days not feeding properly because he was TT an there was much debate amongst mw and mca's (completely useless!) as to whether he was or not. By the time his appointments with the hospital had been lost twice he was 4 weeks old before it was cut. He never took to bf and I didn't have the patience to persevere. A fun 6 months of expressing!!#
Don't think there's any genetic pre-disposition - just one of those things that no-one warns you to look out for if it's your first

Naylor71 · 15/09/2012 20:54

This has been an interesting thread, my baby is 4 weeks old and only briefly last week a mw mentioned she might have a tt so I went to see a private lactation consultant to be told, yes it was a quite severe one and with nhs waiting list at 8 weeks, we paid to go private and have it lazered however when we got there, her mouth was too small for the lazer so we had it cut. She is still feeding quite continuously in the evenings but is definitely putting on weight now and sleeping better. It is upsetting that after all the mw and hv we saw no one diagnosed it earlier and I was told to eat a high fat diet and not to rush about (I wasn't).

MoJangled · 15/09/2012 20:58

OK, I have started a thread on the Campaigns page for a TT compaign here . Come on over and add support, this really really shouldn't be impossible to fix...

BoffinMum · 15/09/2012 21:30

I learned I had a tongue tie at the age of 41 from a bf counsellor. No wonder mum struggled with feeding me.

BoffinMum · 15/09/2012 21:31

Although she had stopped well before I was 41, obv. Bitty and all that. Grin