Lip tie and tongue tie - HELP!

(37 Posts)
TruthSweet Mon 24-Sep-12 10:44:31

DD4 was born late Friday night and fed in delivery room (7 sides!). I noticed she wasn't latching on terribly well but put it down to mec. swallowing and the pain relief I had during my induction (remifentanil PCA - an opiate that has a 7 minute half life in adults and slightly longer in neonates). Biological nurturing didn't work for her (feeding reflexes sluggish though she was very alert) so I latched her on myself in cross cradle.

On the ward she did a blow out mec. nappy and during the nappy/clothes changing crying I noticed she had a quite a thick lip tie. I did Murphy Maneuver and could feel a posterior/sub mucosal frenulum though that was quite thin. She latches with her tongue back although she can stick her tongue out slightly. Ward MW reluctantly did a referral to the TT clinic but couldn't say how long it would be.

I am now exceptionally sore - bleeding, cracked, blistered nipples - and each feed results in wedge shaped nipples with a ridge running over the nipple. I have done exaggerated latch, and am changing feeding position fairly frequently so that the same part isn't getting all the damage. I have lansinoh and am doing moist wound healing but it's not yet working.

DD4 feeds on average 6 sides per feed (I swap sides when she stops suckling but she clamps down with her jaws). The feeding is pretty ineffective as on average she does 7 sucks per swallow, with breast compressions this does get better but still 3 or 4 sucks per swallow. She doesn't open her mouth very wide either. She had 7mls of ante-natally expressed colostrum by syringe on her 2nd night as she fed from 11pm to 6am but she fed straight away afterwards.

She is very mucousy and throws up a lot inc. a spectacular vomit that projectile shot out of her nose and mouth at the same time! She also burps a lot. Her poo was greenish yellow on day 1-2 has been profuse - 8 large poos in first 24 hours - though they are getting smaller and more yellow and is weeing well too.

Is there anything else I can be doing to help her? My brain is slush and I can't think properly. Sorry for epic post but I didn't want to miss any thing out.

RedKites Mon 24-Sep-12 11:14:54

Congratulations on your DD! thanks

I'm sure someone more knowledgeable will be along soon. It sounds like you're doing all the right things. If you haven't, is it worth giving biological nurturing another go, just to see if it gives a better latch? When you're doing an exaggerated latch, are you doing the thing where you flick her lip out (if necessary)? If you scroll down to just before the photos this describes what I'm talking about. Also is it worth talking to your community midwives and/or any contacts you have through the support work you do, to confirm how long the TT referral will take, and see if it can be made more urgent?

TruthSweet Mon 24-Sep-12 11:29:57

The ward MWs were less than helpful and I knew more than them, I got given one of those 'Mothers and Others' magazines on bfing and the early days and that was it as far as help went. The ward MWs hadn't even heard of ante-natal expression shock.

Thank you so much for the link, I have seen it before but in my sleep deprived state had forgotten about it completely blush

mawbroon Mon 24-Sep-12 11:49:46

Congratulations Truthsweet!

Sorry to hear about the lip and tongue tie. Bummer.

As per RedKites' post, exaggerated latch and lip roll are the things you need to be trying, as well as giving biological nurturing another go although opening wide may be hard for her to do.

You need revision as soon as possible. I am pretty sure that the only person in the UK doing lip ties just now is the dentist in Huddersfield.

Have you thought about contacting Milk Matters for expert tongue tie advice? Or the FB group?

TruthSweet Mon 24-Sep-12 12:00:55

I did the test on the link RedKites posted and the papilla didn't blanch which is apparently a good sign and it is fairly stretchy so I hope after a TT revision (if I ever get an appointment and they agree with me). If I don't get an appointment through this week or they won't cut it I will contact MM or Ann Dobson as I think she covers my area (Surrey/Sussex borders).

As she has just wanted another feed I tried the exaggerated latch with upper lip flanging and it sort of worked - less squashed looking nipple (I need more practice which I am sure will happen soon hmm).

TruthSweet Mon 24-Sep-12 19:09:41

RedKite - a big thank you to you thanks I am already starting to heal up, she is only having 2 or 3 sides a feed and she's not falling asleep after every side!

Congratulations Truth! Sounds like you're doing pretty much everything you can. DS had an anterior TT and has an upper lip tie as well, we ended up paying a LC to come out as the MW refused to refer us.

Ann Dobson is fab btw, she dealt with my friend's DC4's TT a couple of years ago.

RedKites Mon 24-Sep-12 21:12:09

Oh I'm really glad it helped. I almost inevitably learnt about that page from someone else on this board, so can't really take the credit for it. Hope you can now concentrate on enjoying your lovely newborn baby <hopes to be doing the same some time soon>.

mawbroon Tue 25-Sep-12 11:22:43

How are you doing today TruthSweet?

TruthSweet Tue 25-Sep-12 12:25:34

Latching is getting better, wedging isn't so pronounced and I have even had some feeds with none what so ever. DD4 even had a couple of feeds were she only needed 1 or 2 sides! She has fed solidly since she woke up at 10am though! Lots of switch nursing grin

Cracks and blisters have healed up nicely as well thanks to the moist wound healing.

mawbroon Tue 25-Sep-12 12:30:37

All sounds good TruthSweet!

Am envy of snuggles with newborn!

Enjoy smile

MigGril Tue 25-Sep-12 16:49:25

TruthSweet h
just seen this thread and wanted to say congratulations on your new arrival. Sounds like your doing well considering the TT.

DS had both lip and TT although I didn't spot the lip tie until his to teeth came through. He managed to learn to feed without having the TT snipped (although I still wish we had for other reasons), it was also me who spotted the TT on day one when I was having problems getting him to latch.

mawbroon Tue 25-Sep-12 18:55:51

How old is your ds MigGril? ds1 just had his tongue and lip done the other week. He is 6yo.

Unfortunately he has many of the consequences of untreated tongue tie sad

MigGril Tue 25-Sep-12 19:38:21

he's 22 months. he has learned to stick his tonge out but that took until 10 months. Personally I would have had it done privately but as DH had a tonge tie that hasn't caused him any problems he's been reluctant for us to do anything.

We have seen the ENT specialist at out local hospital and he is due to see him again next month. So i'm waiting to see what he says this time.

mawbroon Tue 25-Sep-12 21:18:12

Has your dh really had no problems though? Does he know that the following are linked with tongue tie and does he suffer any of them? - allergies and intolerances, digestive problems, orthodontic problems, inflamed gums and increased likelihood of fillings and extractions, sleep problems, migraines, clicky jaw um, what else, can't recall them all, but there are loads of seemingly unrelated things which can stem from tongue tie.

DS1 is 6yo and is about to get braces to correct his distorted palate which is the result of his tongue tie (the tongue shapes the palate, starting from in the womb). His craniofacial development isn't ideal, so he will be getting headgear to wear at night to draw out the front of his face.

Not everyone with tongue tie will suffer the consequences as badly as he has done of course.

Sorry for the highjack TruthSweet, hope you are doing ok!

MigGril Wed 26-Sep-12 06:30:00

Yes I think he probably has, he had orthodontic work when younger and can't swallow tablets but no other ovouse problems. But I know we would have had to have DS cut ASAP to avoid the dental issues as the shape of his mouth is now set, as I believe that happens in the first six months our so.

I do wish I been more instant when he was born but in my foggy hormonal state and found it difficult epically as he did learn to feed well.

Just wish the NHS would do them all as soon as possible just like they used to. then we wouldn't have even had a decision to make.

Good luck TruthSweet I hope you get it sorted asap.

TruthSweet Wed 26-Sep-12 09:15:45

Don't worry about the hijack at all.

Well that was a fun night - after me posting things were going better!

She continued feeding yesterday from 10-2 then had a break for screaming in the pram (we had some errands to run and I thought she might sleep) then fed from 2.45 to 6 with the occasional break for the toilet/nappy change/5 min doze. I took her upstairs then as I was falling asleep at the dinner table (while feeding her of course!)

She then had another feed and went to sleep until 10 when she woke up and started feeding - she had 10mls of expressed colostrum by syringe during the night but fed straight before and fed straight after - she finally dropped off to sleep at 7.15 and then woke at 8.30 for another feed before going back to sleep. She is feeding again now.

This is not normal as far as my experience of newborns goes (willing to be told different) but the feeds are more effective now - lots of 'shush' noises and not so much frantic suckling with no swallowing so she's getting milk, lots of milk! If she's not feeding though she is screaming and her poos are almost always yellow (she's doing about 6 poos in 24 hours and they are always wet plus the occasional just wet nappy)

She is also scarlet most of the time.

She has sucked on my finger overnight and her tongue movement is not peristaltic, it just goes up and down in one movment rather than movement starting at the tip and working backwards. Her tongue also curls upwards when she cries.

I am worried she is going through drug withdrawal (I take an anti epileptic and a SSRI both of which can have withdrawal) or something else is wrong. The MW is coming today so I will check with her.

MigGril Wed 26-Sep-12 16:40:26

TruthSweet as you know the best signs that baby is getting enough is output. So as she's having lots of wet and pooy nappies that sounds good.

A for her behaviour there is nothing that sounds alarmingly out side the normal range. Some newborns are more sleepy then other and you could just have hit a growth spurt day to. Although the amount of feeding could be to do with the tonge tie. It's not really possible to tell on a talk board.

Hope you're midwife visit weren't well.

TruthSweet Wed 26-Sep-12 16:57:31

She's lost 160g which is just over 5% so no worries on the weight front though I did ask for them to come back on Friday just to make sure she's picking up weight rather than losing still. Apparently she looks fine (just me worrying!).

I also checked out the drug withdrawal side with Wendy Jones (BfN pharmacist) and she said there shouldn't be a problem.

BuffyFairy Wed 26-Sep-12 21:22:55

No advice as you know far more than me smile but wanted to say congratulations on dd4! Hope the feeding issues resolve.

mawbroon Wed 26-Sep-12 21:46:11

DS1 cried constantly for the first 9 weeks unless he was being fed.

Is she taking in a lot of air? I remember my mum once commenting on ds1's tight stomach which we assumed was full of milk, but now I know what I know about tt, I see that it was full of air and probably bloody uncomfortable.

Good to hear that the drugs shouldn't be an issue though.

Hope you get a good night tonight.

TruthSweet Thu 27-Sep-12 13:28:24

Well, DD4 had a teeny tiny thin TT cut today at the local TT clinic but it has made a difference to her tongue movement - it actually goes over her gum line now instead of being far back. She does have a high arched palate as well as the lip tie so the TT specialist thought they may be causing an issue too.

She recommended going through the GP and asking to be referred to the local Max-Fac unit (one of the best in the country) as she thought they would do a revision there.

mawbroon Thu 27-Sep-12 14:21:42

What type of tongue tie was snipped TruthSweet? You are maybe aware that it is possible to have both anterior and posterior tongue tie. Often the anterior is snipped but the posterior remains in place continuing to cause problems.

Dr Kotlow you may have seen this video before. There's no sound on it.

TruthSweet Thu 27-Sep-12 15:14:38

Oops should have mentioned it was a posterior TT as it was under the mucosal membrane and only visible with a physical exam.

mawbroon Thu 27-Sep-12 15:44:59

It sounds like you've got it all under control Truthsweet!

TruthSweet Thu 27-Sep-12 16:45:30

grin DD4 is sleeping better too - she has had two naps this afternoon instead of feeding and screaming!

Asmywhimsytakesme Thu 27-Sep-12 17:29:21

Glad things are better [smile

xx

TruthSweet Thu 11-Oct-12 13:06:49

I suspect that the TT wasn't cut fully as I can still feel a tight band where the cut was done.

DD4 is now vomiting profusely multiple times a day both straight after a feed and some time after a feed (on the rare occasions she goes longer than 30 mins between feeds). She seems so unsettled and cries all the time - when she's not feeding that is. DH has now nicknamed her 'Air Raid Siren' because of how strident her cry is sad

She has put on weight and has gone from 7lb 2oz (her lowest weight on day 5) to 8lb 2oz (on day 20) so her weight gain is good even with the vomiting but it's really distressing her.

mawbroon Thu 11-Oct-12 14:12:38

Urgh. That's often the trouble with posterior ties. What are you going to do now? And what was the verdict about the lip?

TruthSweet Thu 11-Oct-12 14:46:26

I spoke to one of the IFCs at the local TT clinic about the reattchment/incomplete revision and mentioned the reflux (vomiting copiously 15 times a day at least) and she said reflux has nothing to do with TT and it's common for babies to vomit a lot hmm. The MW who does the actual revisions isn't there but will call me back at some point.

I have left messages for Ann Dobson & Milk Matters today as I get the feeling I will have to go private sad I am seeing the GP today about the reflux, she also has a bleeding tummy button and yesterday her whole body was spasming while in the sling shock so the HV said I needed to see the GP so I will ask about the lip tie then.

mawbroon Thu 11-Oct-12 14:58:46

Deal with people who know about tt and don't waste effort on those who don't (voice of experience)

Milk matters is a good move. And I know you are miles away, but if there's any way you could even consider going to Huddersfield, I would really recommend it. He would do the lip too and laser is much preferable over scissors.

AnnaLiza Thu 11-Oct-12 15:14:49

truthI bet you know far more than the lot of them combined! Sometimes knowing too much makes things harder sad
I hope things get better. Big hugs [flowers]

TruthSweet Thu 11-Oct-12 17:18:50

We have domperidone for the reflux and a referral to the max-fac unit grin hopefully that will get it seen too!

Oh and I am to give the domperidone 6 times a day - one dose after every feed.... I did mention then she feeds 20+ times a day (she is feeding now which is her 4th feed since 4pm!)

TruthSweet Sun 14-Oct-12 15:12:56

Ann Dobson came out to our house today and cut a posterior tt that had been completely missed by the hospital tt clinic angry

mawbroon Sun 14-Oct-12 17:43:13

Hope things start to improve for you now. Are you getting any bodywork done?

pigletmania Sun 14-Oct-12 18:02:19

Hi I just read up your op and was going to say ask truth, until I saw it was you. Congratulations I hope everyone goes well smile

KafCurt Tue 22-Jan-13 08:03:12

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!

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