Talk to me about continuing to bf a tongue-tied baby (moral support needed!)

[CityDweller]

My 16 wo has tt. Been cut 3 times, grown back each time. Last snip was last week and it's already reattaching. Whilst feeding was agony at beginning, now the issue is mostly that she is very fussy - pulls on and off, chokes, splutters and dribbles and gets upset. Feeds are short during the day, longer at night. But, she's gaining weight fine and otherwise thriving.

It makes feeding out and about tricky and it's also upsetting for me seeing her get distressed trying to feed. I'm also worried she'll eventually start refusing to feed as it upsets her. We've not managed to get her to take a bottle and, as it is, I have that thing where my bm goes off really quickly, so is a pain to store.

I had hoped to bf to at least a year. Has anyone continued to feed a tt baby? How did it work out? Am I mad for even trying?? I've had great RL support, but ultimately it comes down to whether/ how I can cope with the day to day...

DS's tongue-tie grew out and it just got easier and easier as we went along.

He was diagnosed with tongue-tie at birth but I'm in the Netherlands where it was explained to me that they don't cut tongue-tie automatically but keep an eye on it instead. If the baby can feed, they leave it, but then review the situation to see if it affects speech etc. They told me that most cases of tongue-tie resolve themselves - although obviously not very severe ones.

DS had a heart-shaped tongue and feeding was problematic, and bloody painful to start with. I just kept going and it just improved. I noticed one day that he was starting to poke his tongue onto his lips, and then the day that he poked it passed his lips we practically danced for joy. I was terrified that he wouldn't be able to speak properly, or that he would never be able to lick an icecream. DS is now 3 and actually seems to have a long tongue and pokes it out regularly.

Hang in there and see what happens.

Your situation sounds just like mine! The first 4 months of bfing DS were so painful and difficult (including lots of pulling on and off, dribbling etc) I had no idea how I'd keep going. He had two snips which helped a bit but did not fully resolve it. Then practically overnight at around 4.5 months the pain stopped, DS put on weight, could finally feed out about etc. We were then able to carry on till 20 months, unthinkable in those dark early days!

During those months I went to practically every bf drop in going and an ex midwife at one noticed he also had a high palate. I think this is linked to tt and can make feeding difficult.

So, i'm not exactly sure why it suddenly got easier but maybe as he got bigger it did not matter that his latch was not the best. Or maybe it just took him a while to perfect his technique following the snips!

Hopefully something similar will happen to you. Good luck and well done for keeping going - I know how hard it is!

Both your stories are really reassuring - thank you! I do hope that it will just improve of its own accord as she gets older. And if in the meantime she's a fussy, snacky eater then I think I can hopefully manage that.

I can't help feeling sad tho. I've worked so hard at bf and I want it to be enjoyable for both of us, not the somewhat stressful experience it currently is

Are all the feeds stressful, or does it vary with time of day?

Have you tried massage to help stretch/prevent re-attachment? It wasn't easy with a 4wo so could be worse with a 16wo, but still...

Basically, apply dentinox or similar age appropriate teething gel & then rub across the tie, at right angles to it/where it meets the tongue. Rub 2-3 times a day, for about 30s a time.

It was advised by the Lactation consultant at Kings after my DS had his tie cut (a bad tie, limited movement, heart shape etc), along with frequent feeds to keep the tongue moving.

Hth. All the best!!

Red it varies to a certain extent. Night feeds are usually ok. Daytime ones worse. And the bedtime one often the worst - she had a complete screaming for after a few minutes tonight. Would latch back on for a few sucks and then get hysterical again. DH had to walk her around to calm her down and then she latched on ok...

Really upsetting to see her so worked up and screaming at the very thing she wants and is supposed to give her comfort.

Chunky the stretching exercises are somewhat controversial! I know Kings advocates it, but where the person we see trained (Southampton with Mervyn Griffiths) does not. There's no evidence it helps prevent re growth but there is evidence it can engender oral aversion. Anyway we didn't do them...

My DS2 got his posterior tongue tie snipped at 16 weeks after basically being an awful feeder since birth - I wasn't in any pain but his behaviour was very similar to what you describe - gulping, choking, pulling on and off and a lot of screaming (and crying from me). I could never feed him properly when he was awake so I used to feed him during naps or at night, it was all very stressful.

The snip was pretty uneventful but it didn't have any miraculous instant effects and feeding never really got dramatically different. I think it then gradually reattached but he became less distressed by feeding and I'm now still feeding him at 22 months - in fact he feeds for ages in the morning and at night if I let him! I'm getting to the stage of wanting to stop but I guess we had such a bad time when he was younger that I'm kind of just finally enjoying feeding him.

Hope that gives you some hope!

We had four t

We had four tongue tie revisions at 8,13,14 and 24 weeks. I was in agony for the best part of six months. She fed very often for six months ie every 1.5-2 hours for five minutes. But thankfully for my nipples she slept through form five weeks so they got a chance to heal a bit overnight.

She was an adamant bottle refuser and I subsequently worked out I had the same lipase issue whee milk tastes o soap very quickly after expressing unless its scalded. She also projectile vomited on formula when I managed to get the odd oz in to her!

We are still bf she will be 1 next week and I am no longer in pain. The fourth cut was successful and our bf has got better and better since then.

If you have any questions please ask I know how tough it is and how little support there is.

Oh poor you. DD had PTT and feeding her was exactly as you describe (with the added fun of cracked nipples every time she had a growth spurt). We had it snipped at 16weeks and it didn't appear to grow back and feeding did improve so I can't answer your question directly.

However, I wonder, is it possible that having it snipped by someone else might work better? (Can completely understand that you would be reluctant to put dd through it again though)

For example there is Malcolm Levenkind based in London who uses a laser rather than just a snip. So the cut would be cauterised I imagine and perhaps less likely to heal back? I believe he also uses local anasthetic so no pain.

Is it a lactation consultant who has been snipping your DDs tongue, or a surgeon? I ask just because from reading MN threads I have noticed that most of the stories of re attachment seem to happen after a LC has done the snip rather than a surgeon. We saw a surgeon (Graham I Smith at Kingston Hospital) and had no re attachment. This is obviously purely anecdotal though.

Thanks apricot that does give me hope!

minipie a LC did it. She's great, but I see your point. However, I'm reluctant to put LO through it again as we had a bit of a shocker after the 3rd snip, for reasons I won't go into now. Suffice to say it was enough to make me think I should stop interfering in her mouth. The laser option/ Levinkind still lingers at the back of my mind though...

Others know far more than me about TT, so feel free to ignore this, and I'm certainly not suggesting this is all it is - for example it doesn't explain the getting really upset at bedtime - but in case it's contributing to what's going on, you may want to read about distractibility around four months .

Best of luck. I found that an osteopath helped and I'm pretty sure just the passing of time did too - suddenly at around 5mo it got easier.
Hang in there and if some feeds are easier than others see if you can recreate the same environment at other times. I found the biological nurturing position to be a life saver. At 14mo we are still bf & I still use a variation of that position most of the time. If we are out n about he sits astride my knee facing me and nurses like that.
Good luck

It's really giving me hope that several of you are saying it just got better on its own around 4.5-5 months. I hope that is the case for us. I feel like it's taken so much bloody mindedness and perseverance to even make it this far ebf I can make it a few more weeks to see if things get better. (Although that's easy to say when LO is sleeping peacefully beside me, not so much when she's screaming at my boob)

This is a good article about ties

Ties do not stretch or grow out. What happens is that the baby learns to compensate for the restriction. Compensating is not ideal. Imagine you have a leg in plaster - sure, you can walk, but you compensate and end up putting unnatural strain on other parts of your body. The tie is like the plaster cast preventing full and proper movement.

DS1 is 7yo and has had a long list of problems related to his upper lip and tongue ties. Gastric trouble, congestion and hearing loss, sleep problems, mouth breathing and now he is being treated by an orthodontist who is expanding his narrow palate (also caused by the tongue tie) to avoid multiple extractions when he's a teen and to draw out the middle section of his face to allow him to breathe well through his nostrils.

If I had his baby days again, I would be hotfooting it to Dr Levinkind to have it lasered.

Ask to join the tongue tie babies support group on facebook. There is a lot of knowledge on there.

But if it doesn't grow out, how come that DS's tongue has changed? It was most definitely heart-shaped and he could hardly move it - now it's long, pointy and he can stick it out. How's that compensating?

Will read your link though, as to be fair I know nothing about TT other than my own experience.

Sorry to hear about your DS mawbroon.

Interesting to hear people mention high/narrow palate too. I've got a high palate and a very small mouth. I had 12 adult teeth removed as a teenager because my mouth was too small. It runs in my family.

Baroness, I obviously don't know exactly why your DS's tongue has changed, but it is not unknown for thin anterior ties to sometimes rip if the child bashes their mouth. But, most tongue tied children will grow up to be tongue tied adults.

DS1 is great now btw, after his first revision (which wasn't done properly but done enough to relieve his reflux) he turned into a different boy - full of energy and bouncing around He is coping really well with his braces, his orthodontist is really pleased with the way he deals with them.

Or for a thin one to be broken by a toothbrush.

Yes, I've just been googling Dutch websites and it seems that NL is itself very divided on the subject! One website claims that four out of five cases resolve themselves, another says that cutting is recommended and some HV clinics seem to have a drop-in day where you can just turn up to get TT snipped. I've also found a site discussing the argument and there it comments that TT often snaps or gets cut by a child putting toys or cutlery in their mouth. I've tried examining DS's tongue but he won't stand still.

Thing is though, perhaps an anterior tie might break, but often there can be a posterior one behind it or a restrictive lip tie. Great if there's not and the accident resolves the problem, but really that's not the case for many many others.

If you read mainstream stuff here about TT, it's all focussing on feeding and speech and eating ice creams. But, there are HCPs here who have taken a specialist interest in TT and really know what they are talking about. It's a case of seeking them out.

But maw what to do about a tt that serially reattaches then? The person who snipped ours recommended against doing it a 4th time as it'll likely just reattach again. I hate the thought of DD having those issues you mentioned later in life, but I don't know what to do! Is there any evidence that laser is more effective or works where scissors have repeatedly failed??

I think they are finding that there is less reattachment with laser because it cauterises as it goes. Saying that, there do seem to be babies who appear to reattach really easily despite repeated revisions and careful stretching etc.

It might be worth asking on the facebook group.

So if a tongue tied baby has a high palate what happens if they have the TT corrected? Does the palate correct itself?
My LO had his PTT snipped but no one would do the ULT so have had to leave it. He seems fine at 14mo but who knows!
As an aside I know a dentist who had his TT snipped in his 30s because he could not kiss his girlfriend without pain. True story.
Good luck op. I have read good things about laser treatment.

Well, I don't know if you can say that yes the palate will definitely resolve itself, but it certainly won't if the tongue action remains restricted.

Google Brian Palmer DDS. He did some very interesting work on palate formation and also on tongue ties.

I'm in Ireland and they don't snip here til much older. Ds2 was tongue tied and had the op at 2 due to severe speech issues and some feeding issues. He was still bf at that point

It isn't easy, he was my hardest to feed by miles but it is doable. He spluttered and choked a lot and I had to feed leaning back for months as he just couldn't handle my let down but he grew well and it did get easier as he got bigger. He couldn't handle a bottle at all, he was in scbu at birth and even the pro bottle night nurses commented on the fact that he struggled with the teat so switching wasn't an option for us which meant I had little choice but to plough on.