Tongue tie/Lip tie support thread

[Butterfly89]

Omg, I want to cry because this is exactly what I've experienced and I've nearly given up BFing. My LO has what looks like a Type II tongue tie and has had such difficulty from day one. His latch is just so inconsistent and he can't seem to open his mouth for long, and his tongue has little mobility. He ended up with thrush in the the first week (still trying to kick it with Diflucan for both of us). Even with bottle feeding (long story, he's being fed both ways), he clicks and swallows so much air which leads to a colicky, gassy baby. =( We have to burp him every half ounce or so and even still, so much gas. It's just been a painful experience for both of us.

This gives me hope though that we can make it work!! I didn't realize all of the problems we've been having are probably related to tongue tie. He curls his bottom lip in all the time, tenses his jaw, keeps his tongue curled up, and won't open his mouth very wide. He *can* do it, but after a minute, pulls himself off like it hurts him to do it. My doctor did diagnose tongue tie but said to try the exercises before surgery... but I think we will have to go with surgery. He is so distressed and fussy all the time as eating seems to hurt him/stress him out, then the gas from swallowing all that air gives him pain... so nearly constantly he cries and can't sleep enough. The doctor says its "normal" and just from an immature digestive system...but I know a baby only sleeping 20minutes at a time for two days in a row is not normal, even at this age.

I was nervous about the idea of surgery til I read how well it seems to have gone with other LOs. I really hope this is the answer. I'm hoping once the thrush clears up, the doctor will take it more seriously. This thread saved my sanity!!

 

[Care76]

Butterfly, needing surgery for tongue tie is only if the doctor isn't very experienced in releasing them. I would join the Tongue Tie Babies Support Group on Facebook and there is a long list of providers in the files section that are recommended. I also found a dentist that isn't on the list in that group.

 

[paigeypoo]

Im so happy there there is a thing for this!! both my sons have been tounge tied, my oldest i had it cut at the hospital and only managed to breast feed for 6 weeks.
My littlest boy is now 4months, he has been tounge tied since birth, it does effect feedings but i just get throught it and finaly after 4 months of trying he has been having some fabulous laches on my left breast only about 3 on the right over the last 4 days. Im so happy. i think my best advice is to buckle though it if you can. My LO is only mildly tied. I cant even manage to express my excitment about this thread.
i was born with my upper lip tied aswell as tounge tied. (it does effect my kissing abilities) when i was 3 i was in a trycicle acident that i faceplanted and tore my upper lip so now there is an excess skin there, then dentist has a name for it that i cant think of.

 

[kerrie24]

Just came across this thread and wanted to add my son was diagnosed with tt after I asked them to check at 10 days old.I was in agony and had seen someone mention it on here,and it turns out he did have it.As we had made it to ten days and his weight gain was fab,I didnt really want to put him through getting it cut so I worked on getting the correct latch and after a few weeks it stopped hurting me.That was in may 2010,and he still hasnt self weaned yet,so,yeah it can be done.

 

[Butterfly89]

No surgery would be the ideal!! I'd hate to put LO through that especially if it doesn't solve it completely. We have been working with the exercises and it did improve. He can stick his tongue out a little now, but he still has curled lips and can't latch properly for more than a second. Even with bottles, still lots of clicking/gulping. I feel like I gave up way too soon but I couldn't take the pain anymore and he just screamed when I tried to BF. =( And my supply never came in fully because he couldn't latch for long enough.

I'm hoping we can find a solution anyway because I'm 99% sure his gas problems are related to swallowing all the excess air!

 

[Sproglet]

What bottles are you using? The tongue tie nurse told me narrow necked orthodontic teats are easiest for TT babies, not breast like teats (TT ctn, Avent). And I used Dentinox colic drops (simethicone, there's other brands if you can't get dentinox in Canada) which really helped her get her wind up, as soon as we gave it to her you could hear her tummy gurgle and she would burp, we've only just stopped using them around 4 months old.

 

[paigeypoo]

I just want to say, Not that I think correcting it is the best thing to do but the procedure is really no big deal. less painful than circumsizing for those of you that have had your boys foreskin removed (i have not) my oldest son had the tongue tie snipt in the hospital at 5 days old. it barely bled and he was bothered more by the needles they do. mind you my experience is only with a mild tie.
I remember myself at 13 trying to cut my own cause i wanted to be able to stick out my tounge...
I havnt looked into it with my 4month old. Im going to have him diagnosed first cause it is more prominant than his brother. when he stickes his tongue out the front devides and you can see a line down his tongue.

 

[Glitterbaby]

Thanks to Emerald87 for pointing me in the direction of this thread! So sorry that you are all going through this! I posted a thread last night about our situation, but I will paste it here for ease!

"My baby girl is 8 weeks old tomorrow and I have been struggling with very painful breastfeeding throughout. I really want to continue with breastfeeding, but it has been physically draining, with the pain and I have had to supplement for some respite (which I initially felt terrible about, but now realise is one if the reasons that I have been able to continue at all). Emotionally, I have been feeling guilty about the feeling of dread I have when baby starts with the feeding cues - and the whole bf experience has been pretty miserable for me so far, although the thought of giving up also makes me feel dreadful.

I am currently demand feeding, and my DH gives baby one bottle a day to give me a rest, while I pump (which generally isn't too painful). I struggle to get enough out for one feed, so we collate it together until we have enough to feed EBM, but if we don't have enough we use formula in the bottle (we also had to give formula top-ups early on as she was very slow to regain her birth weight). I am now taking paracetamol prior to feeding to try and counter the pain as advised by the lactation nurse. My nipples are pretty much sore and painful to touch all the time, though (we joke that they glow in the dark! ).

After seeking help from everywhere - literally! - and being told that the positioning and attachment looked good and that baby was breastfeeding well many times, last week we finally found out she had a high palate and posterior tongue tie.

We have decided to have the tongue tie "corrected", and I wondered if anyone else had any experience of this and whether it improved the situation? I guess I am looking for success stories to give me hope (and I keep telling myself I am a third of the way through the 6 month target I had, even though I can't say I EBF )!

I also have to say, I find it surprising that tongue tie isn't routinely looked for, as I feel like I have been through 8 weeks of pain which may have been avoided, but it was only thanks to a very kind HV who knew a lactation nurse at a hospital in our area that this even got considered

Sorry, that was an epic ... thanks for reading if you got this far! "

It is very reassuring to hear you success stories - and interesting to hear how your stories which are so similar to ours (jaundice, difficulty reattaining birth weight, formula top ups needed, sore misshapen nipples, gassy baby etc) - we have tried to get advice from everywhere - GP, health visitors, midwives, BFN - finally I saw a HV who sent me to a drop in clinic at Wexham Park in Slough - the lactation nurse there started the consultation with checking for tongue tie and I could have hugged her when she said that was the problem! She has referred us to the specialist at Southampton General and we should be able to see them in the next week, which is such a relief (as you all know days are looooong when you are curling your toes in pain every feed!).

Thank you so much for this thread!

 

[kerrie24]

gliiterbaby i'm glad you are getting sorted x

 

[smawfl]

Hi Ladies

Can you take a moment to sign this petition to help get tongue tie diagnosed and corrected in newborns asap

https://epetitions.direct.gov.uk/petitions/36614


And also if you're in the South Warwickshire area please could you sign this local one?

https://www.gopetition.com/petition...aggregation&fb_aggregation_id=246965925417366

Since having a baby and speaking to other new mums it seems this is so much more common than you'd think.

 

[Glitterbaby]

Hi Ladies

Can you take a moment to sign this petition to help get tongue tie diagnosed and corrected in newborns asap

https://epetitions.direct.gov.uk/petitions/36614


And also if you're in the South Warwickshire area please could you sign this local one?

https://www.gopetition.com/petition...aggregation&fb_aggregation_id=246965925417366

Since having a baby and speaking to other new mums it seems this is so much more common than you'd think.

Signed with pleasure!

 

[RobMarcusDDS]

Thanks for hosting this international forum to discuss tongue-tied and lip tied problems in newborns! As a pediatric dentist in Maryland, I have been fortunate to have had the opportunity to help many moms and babies to eliminate the tongue-tie and lip tie obstacles to better, faster, and more efficient nursing, by using my dental laser. Almost no post treatment problems is greatly satisfying and highly rewarding for all party's involved! If you have any questions or concerns, please feel free to contact me directly. My office phone in the US is 410-526-5050. Best Regards, Rob Marcus, DDS

 

[Emerald87]

bump

 

[MindUtopia]

I haven't had a chance to read through this thread as I have a fussy baby on my hands, but I wanted to post some photos to get some advice on what might be a lip tie. My LO is 8 weeks old and we've never been able to feed successfully from the bare boob except for a few feeds here and there. I used a nipple shield for the first 7 weeks until that caused terrible chafing and dermatitis. I've gotten mastitis both times I tried to wean off the shield as it seems my daughter's latch is very shallow. After the dermatitis and the second bout of mastitis, we've been doing expressed milk (only about 1-2 feeds a day as that's all I can manage to get out) and formula. A friend who is a BF counselor (sadly my friend lives overseas so can only help us from afar) suggested she might have a lip tie since her daughter did as well and I had a look and saw this. Is this normal or a lip tie? And what would I do about it in the UK, if anything? I asked a BF counselor I've been seeing about it today over the phone and she said there's no one in the UK who fixes lip ties anymore and there would be nothing we could really do about it anyway.

 

[Emerald87]

I haven't had a chance to read through this thread as I have a fussy baby on my hands, but I wanted to post some photos to get some advice on what might be a lip tie. My LO is 8 weeks old and we've never been able to feed successfully from the bare boob except for a few feeds here and there. I used a nipple shield for the first 7 weeks until that caused terrible chafing and dermatitis. I've gotten mastitis both times I tried to wean off the shield as it seems my daughter's latch is very shallow. After the dermatitis and the second bout of mastitis, we've been doing expressed milk (only about 1-2 feeds a day as that's all I can manage to get out) and formula. A friend who is a BF counselor (sadly my friend lives overseas so can only help us from afar) suggested she might have a lip tie since her daughter did as well and I had a look and saw this. Is this normal or a lip tie? And what would I do about it in the UK, if anything? I asked a BF counselor I've been seeing about it today over the phone and she said there's no one in the UK who fixes lip ties anymore and there would be nothing we could really do about it anyway.

That looks like a LT to me; however this would most likely not be the main issue. LT aren't as significant as a TT in regards to BF'ing. My LO was able to BF with a LT, but she had a shallow latch and was constantly clicking before I had it lasered.

You should get an LC to check your LO for a posterior tongue tie, which goes hand in hand with LTs usually. That, more than certainly, will be the root of your latch issues.

As for options in the UK, I don't know I'm sorry. Hopefully some other ladies here will give you more information there.

 

[kitabird]

I haven't had a chance to read through this thread as I have a fussy baby on my hands, but I wanted to post some photos to get some advice on what might be a lip tie. My LO is 8 weeks old and we've never been able to feed successfully from the bare boob except for a few feeds here and there. I used a nipple shield for the first 7 weeks until that caused terrible chafing and dermatitis. I've gotten mastitis both times I tried to wean off the shield as it seems my daughter's latch is very shallow. After the dermatitis and the second bout of mastitis, we've been doing expressed milk (only about 1-2 feeds a day as that's all I can manage to get out) and formula. A friend who is a BF counselor (sadly my friend lives overseas so can only help us from afar) suggested she might have a lip tie since her daughter did as well and I had a look and saw this. Is this normal or a lip tie? And what would I do about it in the UK, if anything? I asked a BF counselor I've been seeing about it today over the phone and she said there's no one in the UK who fixes lip ties anymore and there would be nothing we could really do about it anyway.

yes, that is a lip tie, similar to what my LO has. We saw a consultant to have his tongue tie divided and he said they don't do anything for lip tie. Apparently it doesn't imterfere with feeding, but it certainly seemed to for us. I found that he feeds with his top lip curled in so doesn't get a good latch. Try to encourage your little one to uncurl her lip. If you search on you tube for "flipple technique" or "exaggerated latch" that might help you.
Is there any chance she has tongue tie too?

 

[Snoozey_Puppy]

My little boy is just under 3 weeks old and we had his tt snipped today through a private consultant. It was a great relief when the private consultant confirmed he is 75% tongue tied today, it explained all the difficulties we had re breastfeeding, his weight loss and jaundiced. In some ways, it lifted part of the guilt I have been having as I was blaming all his condition on myself due to low supply.

I am truly thankful to the lady in breastfeeding group who managed to spot his issue.

My question is... for those who had their babies tt snipped, how long does it take for you to see an improvement? There are some ladies who mentioned they noticed the difference right away, but for my LO, his latch still seems the same right after the treatment?

 

[Emerald87]

My little boy is just under 3 weeks old and we had his tt snipped today through a private consultant. It was a great relief when the private consultant confirmed he is 75% tongue tied today, it explained all the difficulties we had re breastfeeding, his weight loss and jaundiced. In some ways, it lifted part of the guilt I have been having as I was blaming all his condition on myself due to low supply.

I am truly thankful to the lady in breastfeeding group who managed to spot his issue.

My question is... for those who had their babies tt snipped, how long does it take for you to see an improvement? There are some ladies who mentioned they noticed the difference right away, but for my LO, his latch still seems the same right after the treatment?

Sorry to have to tell you but it took WEEKS to get LO onto the breast, with very slow improvement. However, to let you know, we got there so don't give up hope It's progressive. Some people see a sudden change. Some people, like myself, only really noticed once LO actually latched successfully.

I highly recommend the cross cradle hold with baby led attachment. That's how we got LO on

 

[Care76]

I haven't had a chance to read through this thread as I have a fussy baby on my hands, but I wanted to post some photos to get some advice on what might be a lip tie. My LO is 8 weeks old and we've never been able to feed successfully from the bare boob except for a few feeds here and there. I used a nipple shield for the first 7 weeks until that caused terrible chafing and dermatitis. I've gotten mastitis both times I tried to wean off the shield as it seems my daughter's latch is very shallow. After the dermatitis and the second bout of mastitis, we've been doing expressed milk (only about 1-2 feeds a day as that's all I can manage to get out) and formula. A friend who is a BF counselor (sadly my friend lives overseas so can only help us from afar) suggested she might have a lip tie since her daughter did as well and I had a look and saw this. Is this normal or a lip tie? And what would I do about it in the UK, if anything? I asked a BF counselor I've been seeing about it today over the phone and she said there's no one in the UK who fixes lip ties anymore and there would be nothing we could really do about it anyway.

I agree with the others, usually there are posterior TT with a LT. There is a Facebook group called Tongue Tie Babies Support Group that has lists of doctors who will be able to help diagnose and release if needed. If there is nobody on their file then ask in the group on the page if anybody in your area knows of any doctors that can help you.

 

[Care76]

My little boy is just under 3 weeks old and we had his tt snipped today through a private consultant. It was a great relief when the private consultant confirmed he is 75% tongue tied today, it explained all the difficulties we had re breastfeeding, his weight loss and jaundiced. In some ways, it lifted part of the guilt I have been having as I was blaming all his condition on myself due to low supply.

I am truly thankful to the lady in breastfeeding group who managed to spot his issue.

My question is... for those who had their babies tt snipped, how long does it take for you to see an improvement? There are some ladies who mentioned they noticed the difference right away, but for my LO, his latch still seems the same right after the treatment?

It also took weeks for my LOs latch to improve. We also had to have his tongue released three times before there was no reattachment significant enough to cause issues.