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

aamia Sat 29-Sep-12 11:01:21

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.

lookout Sat 29-Sep-12 13:02:46

Sarah Bridges ICBLC in Eton is very good, she did my son's here, and Luci in Chiltern is apparently good too, a friend used her twice here

comixminx Sat 29-Sep-12 15:02:46

Luci in the Chilterns (Princes Risborough) is who did my DSs TT yesterday: can definitely recommend her.

Loueytb3 England Sat 29-Sep-12 19:08:27

We used Luci too and she was great. Would definitely recommend.

CH2207 Sun 07-Oct-12 23:12:28

Another name for the list. When my son was born he lost weight, screamed, midwives and doctors told me (wrongly) that I had no milk, he was formula fed while I wept, he screamed more, I tried to nurse as supply dwindled, eventually at 4.5 months reflux diagnosed and Infant Gaviscon prescribed. I worked for 9 months to relactate (eventually succeeded), but reflux got so bad by 15 months that son was hospitalised... following which he was put on extremely high (adult) doses of PPIs and I went on an elimination diet because of his almost universal food allergies (all of course initiated by aerophagia and formula use)... He's now 3 and medication free because we're successfully curing reflux with GAPS diet (and still nursing) ... But professionals managed never to look inside my son's mouth. Consequently PTT and LT only diagnosed at 20 months. I'm a member of the FB group mentioned earlier which is a brilliant resource. And have had contact with Dr Kotlow who is also brilliant and tireless in his work for TT babies/children. Considered trip to Albany but with (at the time) unwell toddler on medication and special diet it felt like too much to handle. Now hoping to see Dr Levinkind when he gets his TT clinic up and running...

pommesdeterreetfromageblanc Fri 02-Nov-12 14:02:47

I saw three people who did not think she was TT... saw a specialist this morning and she was. I have been in pain for 10 days, thinking of giving up BF every day... I hope this will sort it.

TheNameisNOTZiggy Fri 02-Nov-12 14:31:11

Signing in! Had problems bf from birth, mws never mentioned TT, in fact I kept being told "well, big nipple, small mouth, so you will have problems", grrrrrrrr - what no help to solve it?!!!.
Paid private LC who diagnosed PTT, mw agreed! Went to LC qualified to snip it recommended by MW. LC%232 said it was too mild too treat.... Still having bf problems and baby not gaining weight. Eventually at 4 weeks I threw toys out of pram and made a last ditch attempt to get bf on track. Spoke to LC%231 and went with her original recommendation for a LC qualified to snip.
Wow. Difference was immense. Suddenly my nipples were not squished and sore. Of course by this stage my milk was drying up and baby was scarily skinny. So had another 4-6 weeks of nightmare pumping and feeding until baby filled out and looked less like a pixie. Now at almost 6 months he looks amazing and feeds really well. All the effort was well worth it. However I have a lot of bad feeling towards to HCPs we came across originally as I feel they did little or nothing to help.
Breast is best until there is a problem... Then the nhs runs out of steam as they know formula will solve the baby's weight issue. They just don't address the underlying problem. V sad. sad

Baby also has a lip tie but not sure of the implications of that now or in the future.....

TheNameisNOTZiggy Fri 02-Nov-12 14:34:38

We used Mary Griffiths. Ann Dobson came highly recommended too and a friend used her. Both are LCs and come to your house to treat. Our PTT took just seconds to sort. She spent a couple of hours with us - taking history, watching a feeds, helping to address latch. Highly recommend her.

purpleflower123 Fri 02-Nov-12 14:49:37

DD2 has a mild posterior tongue tie. She can push her tongue out. I asked a midwife who said no and the HV said she didn't know what to look for. A BFC referred her to the local TT clinic who said yes it's there but he wouldn't release a posterior TT so sent us to Kings college hospital in London (We got 1 day notice to arrange sitters for DS and DD1 and for DH to take the day off work).

After waiting for hours (DD2 was the eldest baby there at 12 weeks and they did it in age order as they were starved) they refused! Said it was very mild and the risk out weighed the benefit as it was between two big veins. They told me it was positioning and latch and then didn't really help. They told me that at 12 weeks she was too old to feed in the cradle hold position, I had to sit her on my lap facing me but her latch was worse that way. I didn't even get any of the follow up we were promised. I have persevered and DD2 is still BF at 10 months but it still hurts.

purpleflower123 Fri 02-Nov-12 14:52:18

They also said that it couldn't be that bad as DD2 was putting weight on extremely well and thriving. It came across that as long as she was ok my pain didn't matter which is why I just put up with it sad

mawbroon Fri 02-Nov-12 15:29:16

Oh this makes me so sad and angry.

Purpleflower, where are you based? We had ds1's ties (lip and ptt) released here It was worth the 480mile round trip to have it done properly.

He is 7yo and I have posted extensively about all the health problems that he has suffered because of untreated ties. It is about so much more than just breastfeeding.

I would urge everyone to please learn about these ties and have them revised if you possibly can

NatashaBee Fri 02-Nov-12 15:36:07

Oh yes. I struggled for 2 weeks to breastfeed, eventually gave up as DS rarely even attempted to latch on in the end, just got distressed. I spent hours with a BF counsellor faffing around with different holds, nipple shields etc. I expressed for about 8 weeks but my supply dropped off. I only realised the problem when I googled for tongue tie pictures on a whim after reading it on here. It seems to have resolved itself now but I guess we'll find out for sure when he starts talking properly.

Curtsey Fri 02-Nov-12 17:09:21

Yep. PTT. Found out from the internet but was fobbed off by 3 different health professionals because she was still latching and feeding fine though weight gain was very slow, my nips were very cracked and she was a screamer. Got a private LC in the end and she was snipped at 14 weeks.

AngelDog Fri 02-Nov-12 18:09:17

Joining in too. DS2 has at least some tongue/lip restriction. HV glanced in his mouth and said, "no tongue tie - but he's had the check by the paediatrician at the hospital, so you know that anyway."

fotheringhay Fri 02-Nov-12 20:35:53

Me too. It hurt more than I thought it should so I nagged every midwife/health visitor/BF supporter I could find for 10 days until one eventually diagnosed it.

Very fortunately we got it snipped the next day (North Bristol NHS trust), and feeding was immediately much more comfortable. I wouldn't have carried on otherwise due to the pain.

This is such an important issue, thanks for starting the thread.

pommesdeterreetfromageblanc Fri 02-Nov-12 22:05:27

Hi fotheringhay Did you have your baby TT done in St Michael's? We saw the lady there today, what a star! I don't want to count my chickens but I think it feels a bit more comfortable already.

fotheringhay Sat 03-Nov-12 08:46:23

No, Southmead hospital. Hope it keeps on getting more comfortable for you smile

pommesdeterreetfromageblanc Sat 03-Nov-12 12:04:43

fotheringhay It is not quite settled yet but she seems to feed quicker so that should help. I am going to Southmead for a BF clinic on Wednesday.

fotheringhay Sat 03-Nov-12 17:41:06

Best of luck pommes

Notafoodbabyanymore Wed 21-Nov-12 05:49:06

Signing in (late!) DD had tt, missed by all midwives and health visitors, ripped my nipples to shreds and made the first few weeks miserable.

Finally diagnosed by wonderful BF counsellor, snipped, and BF until 18 months.

I still have scars on my nipples.

KafCurt Tue 22-Jan-13 08:02:06

Please can everyone read, sign and share with others our petition to get Lip Tie checked at birth: http://epetitions.direct.gov.uk/petitions/44390.
To follow our campaign please like us on facebook at: www.facebook.com/LipTieSupportGroup

Thanks!

Kytie Mon 08-Apr-13 22:22:08

Hi my baby has had tonguetied cut 3 times and each time reattached so depressing .he has found of feeding okay but small amounts and so often .i was wondering if to have cut a 4 time .but then it could reattach again it would be so great to get that feel good factor of bfeastfeeding and for olly to feel happy and full after each feed has anybody been in this situation where a posterior T T keeps reattaching .part of me feels not to put him through it but its so hard for him to stay latched and fed like trying to suck milk out of a slightly squashed straw .these poor babies x

Yep!wow, it's so common according to this thread! DS had/has a ptt, snipped after the most agonising 4 weeks ever. Stayed 4 days in hospital and couldn't get him latched on at all, must have seen about 8 different midwives, lactation consultant etc...LC said "he does have a tt but lots of things are blamed on tt, you need to sort the latch" with me crying my eyes out.

It's an absolute joke, made me really angry. Eventually the HV reffered me to tt clinic who said it was a very tight ptt. However, I didn't get any follow up or told to massage/stretch it. I am pretty sure it's grown back and that he also has a lip tie. It's still painful to feed and he's nearly 10 months.

Has anyone had it snipped again so late?

Kytie Tue 09-Apr-13 22:53:36

Hi moresnowplease my baby olly is now 5 months old and still not sure whether he's too old to have it snipped again he can stretch his tongue out so T T not as thick as it was but he won't open his mouth very wide it can be painful and I do think a lot of it is bad habits and I think he could open wider but he chooses not too ! So stressful and a lot of my friends have suggested doing formula but I just couldn't imagine not bfeastfeeding my baby my other 3 children fed so well and over a year so I knew something wasn't right the TT was missed by GPs and midwives .there needs to be a lot more support for mums and babies with TT it's so emotional .things have got bit better last few days as I'm giving olly baby baby rice and he's not so hungry and easy to breast feed when he's not starving hungry .all the best Kate

Kytie Tue 09-Apr-13 22:57:59

Sorry meant to asked is a lip tie easy to see as I think olly may have one do you what that can affect ..?

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