Possible tongue tie and feeding problems

[IJustWoreMyTrenchcoat]

Hello, it is me again, still having problems with an unsettled baby .
He barely sleeps, especially at night and I don't know if it is hunger, pain or a combination of the two.

I am becoming more and more convinced of a tongue tie, possibly posterior. I am using the Milk Matters service and have sent my photos and am going to fill the form out over the phone (no access to laptop at the moment and can't fill the form out on my iPad).

I am getting more and more frustrated as I feel this is the problem but keep getting told there is no tie (Midwives etc. are only looking for an anterior tie). If he did have a tie it would explain so much - the poor latch from day one, my sore nipples (compressed, blanched, eventually cracked and bleeding) and also the wind/hiccups etc.

I have been attempting skin to skin today to try to get him latched without the nipple shield without much success. Had to resort to using it then taking it away. He got so frustrated and was just bobbing his head from side to side and hitting me with his fists. He eventually latched on but it was very shallow and he kept 'slipping off'.

I know the shields have the double whammy of reducing my supply over time and making it harder for him to access milk. This and the top ups - which are the only thing that satisfy him - will obviously threaten my supply over time - I am still expressing when possible.

I guess I just want some advice off people who have had ties successfully dealt with- I found a link of what NHS hospitals will cut them, can I ask to be referred or is it best to go private? Things are pretty hopeless and I am so close to just giving in and introducing more formula so at least I can be sure he is not hungry.

DS1was revised by John Roberts. We travelled 400mile round trip to have revision done properly after a previous revision turned out to have been botched.

But he was 6yo, so a whole different experience from taking a baby.

Hi op.
Was thinking about you yesterday, tried to post last night but my lo screamed from 4 till 8!!
Hope you've had a good night and got some sleep
Baby's are hard work sometimes
Lots of great advice on here, it sounds like you're very aware of your baby's needs.
A few things i wanted to offer. .. (sorry if you already answered bit blury eyed this morning! !)
Are you using lansinoh? IT really is magic stuff. Put on after feed ( more often if you can) no need to remove before feed
Are you taking paracetamol? If not take it and take it regularly. If you are in less pain feeding will be more doable and easer for baby.
If he cries when put down.... don't put him down. Let him sleep on your chest listening to your heart (or dh , mil, dm, friend) he won't need it forever. If he has tt nursing is really hard work and he could be over tired. The wind taken in moves at it's own time and just moving them can make it shift uncomfortably.

I have spent days with dd sleeping like this. ( it's lovely and these baby days pass so fast )
If he gets a few good sleeps a day he will have more energy for feed.

Are you co sleeping?

Have you tried keeping him swaddled?
I have a mental list of things that have settled dd and when she is unsettle I just keep going over it til one works for example. Feed. Change. Wind. Cuddle. Swing chair. Tummy time.. hairdryer on face ( she loves it :) ) feed bounce on knee, sing, stand and sway.

Walk in garden ect ect
Another thing i was told on mn is the time between first yarn and over tired is a nano second
As soon as you see a yarn reduce stimulation and encourage sleep.
Have you tried grip water?

For now it's about staying sane and trying to do what you can until he gets tt / reflux sorted.

Please feel free to ignore any or all advice above. I'm no expert just a mum.

Hello Rosiedays sorry to hear about you little one, hope they are more settled for you.

Hard work is right! I use lansinoh but not paracetamol anymore, though I probably should! He won't settle on my chest anymore, he did when he was first born and I could get some sleep that way, he wants to be cradled in my arms so I am a bit scared to sleep like that. He doesn't really settle with co-sleeping either. During the day I will cuddle him all he wants, I would just love a bit more shut eye at night. He hates to be swaddled, he fights for his arms free, then startles himself awake. But he is improving a little, it must be a full tummy.

I think he is settling much better with the formula, I don't know how much he is getting out of breastfeeding. It certainly isn't filling him up.

He is still being sick a lot even with the gaviscon, dairy elimination next (eek, not fun for a veggie, don't fancy being almost-vegan).

Hi OP, just had to reply as I am in a really similar situation with my 11 week old DD. She took over 4 weeks to regain her birthweight and since then has been putting on weight at the very lower end of the guidelines. I also suspected tongue tie but a NHS linked breast feeding leader checked her for anterior and posterior and said there wasn't one. I then contacted La Leche League, really for more help with the latch as I never felt it was quite right and she was always slipping off. I ended up being referred to a clinic ran by the local LLL leader who immediately spotted an upper lip tie and a posterior tongue tie. I've now been referred to the RVI to get it cut - unfortunately too late to avoid having to give formula (as of Wednesday after a poor weight gain over the last 2 weeks) but I'm hoping to carry on feeding, even if that means with a top up of formula to complement the good stuff. The clinic I went to was near Sunderland - may be too far for you to travel from Cumbria but please PM me if you would like the details.

Now here is the bit where I may have too much information (from lots of googling on my smart phone during night feeds!) and not enough knowledge so someone may well come along and put me right... So, the first thing the LLL leader did was check for the upper lip tie and I since learnt that ULTs and PTTs are usually found together. ULTs are much easier to spot than PTT so you might be able to see yourself if your LO has one, if so a PTT would be fairly likely. There is a fantastic Facebook group called Tongue Tie Babies Support Group - people often post photos of possible ULTs on there to get them confirmed so you can see what one looks like and ask for opinions if you think your LO does have one (there seems to be a lot of very qualified, experienced HCPs and IBCLCs commenting and supporting on the group).

Hope that helps and feel free to PM me if you need any more information.

Hi
I'm glad to hear he is setting a bit better for you. Keep up the good work.
I would be very careful bf on vegan diet. Even committed vegans i know have opened their diet up whilst establishing bf. Lots of oats are great for supply (and a ggreat excuse to eat flapjacks)
Do you Have a swing chair? They are the same angle as cradling I always put something that smells of me in ( usually one of her blanket that i have been sitting with) it has been my sanity saver. ( I Have read of more than one mum on here who Has slept baby in them all night just to get some sleep)
My dd Has been lovely today. Yesterday's screaming was my fault for not responding quickly enough to her demand for boob. :) ( I needed to get the washing in!!!)
Have a lovely weekend and hope you Can access some professional help.

lady I believe we've seen the same people at lll!

I've asked for the op to be added to the lll tyne and wear fb group which is how our tt was spotted by the lll leader (via messages and then a visit to her) but if you know of a better/ easier way?

I agree with rosie about Vegan diet too - explore reflux/ tt before looking at non dairy and yes to lots of oats, and any whole grain helps.

milk supply is more robust than we think and can easily be stimulated / kept going. try to relax about that as best you can, though I know full well how hard that is

we also used a swing chair, lo slept in it for a few weeks, and for months for naps as it seemed the best angle for him reflux wise.

I will also add regarding upper lip tie - Mrs Lawson does not do them (or has only done a couple in 20 years) and the lll leader does not think nec. you can do stretching exercises (flicking lip up when playing). my lo has one and so do I. his has now stretched, as mine must have done! I often flip his lip out and watch his latch a lot. the tt can be more of an issue as the tongue needs to cup under the nipple/ areola (sp?!) to both get a good seal and stimulate the milk. it then needs to be able to 'ripple' the milk back to swallow. a tie, including posterior, means limited motility. my lo also has a high palate which hasnt helped.

(I'm sensing granny suck eggs but just incase anyone else is reading and wants to know!)

It is a MYTH that lip ties and tongue ties stretch.

Clarella - it sounds like we might have done! Good idea to add OP to FB group, never thought of that.

OP - the names and phone numbers of the LLL leaders are on the FB page. Although they don't cover Cumbria they may be able to refer you to someone who does if you can't travel over. I would recommend trying to see someone to get the TT diagnosed. We still have a long way to go but if my DDs hadn't been spotted then I don't think I would still be bf now.

Hello, thanks for all of your tips and suggestions.

The Specialist Feeding Midwife has been on the phone to me just now and when I mentioned a possible posterior tongue tie to her she said she had never heard of it!

She did say when she was next in work she would fax a referral to either the RVI or Barrow-in-Furness hospital for him to be looked at and to mention it to the Paediatrician to see what they think. She said if the Paediatrician didn't think there was a tie the referral could be cancelled (I will push for it anyway). This is all a step in the right direction but won't help if Mrs Lawson at the RVI doesn't normally cut posterior ties.

Did anybody have success feeling a bump under the tongue to check for a tie? My boy is so wriggly I am scared I am going to poke his gums and hurt him so I back off.

Trenchcoat - not sure where you have heard that Mrs Lawson doesn't cut posterior tongue ties? We have an appointment to get my baby girl's cut next week.

Did you manage to see if there is an upper lip tie? As I said that is easier to identify than a PTT and is a good indicator that there is one. If you can get to the right IBCLC, as I did then she could also refer you to the RVI , the referral doesn't have to come from a paed or midwive.

Hi, just wanted to say that I'm in a similar situation wrt ties, but after a week of top ups I've managed to get back to full bf. Still in a fair amount of pain though. DC is 5wo today, anterior tie cut straight after birth but still had a very shallow latch and abnormal tongue position during bf. I realised there was a problem when we didn't have any poos for a few days and reading some descriptions from helpful posters on here regarding ptt symptoms.

I'm not in the UK at the moment and even if the LLL here has been fab I'm not sure the local leaders have very much knowledge of posterior ties (maybe it's just a translation problem though) and in any case there is noone in the area that will touch an ult or seems to know what a ptt is. Not that I'm an expert of course, but there seems to be no knowledge of the problem or up to date techniques (told it's impossible to cut ult in babies as they bleed too much).

Thanks to all those suggesting dentists who could help with a diagnosis or resolution. I'll be home on a visit in a few weeks so I'm going to try to get a private appointment when I'm over and struggle on until then. Good luck to all of you dealing with bf being disrupted by ties

she doesn't 'normally' ie I believe posterior is not generally seen to be an issue (probably nice guidelines??) - certainly her registra does not so you must insist to see her - HOWEVER the lll leader has sent so many to her and confirmed positive results that she will do so especially if the lll leader has observed feeding to check there aren't other issues - she tends to say the worst is that there is no difference.

I was.nt aware I had nipple 'pain' till afterwards - I'd been slapping lansinoh on so much and just thought 'pain' would be bleeding crusting nipples. so she queried its usefulness with us as usually it's the pain that leads to referral I think. but I have to say I haven't used the cream since and lo's latch definitely improved. he did however have mild reflux on top which since flared from time to time. the tt snip did help a lot though.

Hi Trenchcoat

I just wanted to post to say it sounds like you and I experienced very similar issues. My DS ended up having tongue tie which was un diagnosed by 6 different professionals! In the end I paid for a specialist counsellor to come to my house and she spotted it. I was then referred to the hospital where I had him and they snipped it (a week later). It definitely helped but the issue I have had us that my DS just doesn't know how to use his tongue effectively and the problems with latching and staying on continued to the point where we moved on to formula. I really battled with the decision to switch as I was desperate to BF but I found it was having a detrimental effect on our relationship as I was dreading every feed and crying with pain and having to take him off, then he was hungry etc and the cycle would start again. Anyhow the point I'm trying to make is that you need to do what's right for you emotionally and if you've tried everything and its still not working out don't let anyone guilt you into not BF if that's the route you decide. Fingers crossed it does work out for you.

Update on my ds and his posterior tongue tie. Got it snipped on Monday at a private clinic. £100. I was fortunate as a lactation consultant colleague was visiting (the snip was done by a cranial osteopath with the extra training) so I felt very reassured.

He cried a little and bled a little and seemed sore in his mouth the next day. But he went straight back on the breast immediately after the snip. She recommended a quick feed just before too - to relax us and wash his mouth over.

My left nipple is feeling less sore and the right is about the same. For sure he needs to relearn how to feed. He's been moving his tongue around like it's new to him.

I saw another lactation consultant at the local breastfeeding clinic today (that they hire for a few hours a week). She gave me a few exercises to loosen the tongue that I will describe if anyone is interested.

So I'm feeling optimistic but it is still the start of the journey.