Tongue tie and silent reflux experience?

[Nat888]

6 week old just being diagnosed with posterior tongue tie. Bit of background

He has real trouble sleeping. Not getting to sleep thats easy but staying asleep. He wakes up constantly in discomfort. He is so wheezy and sounds like he has a cold constantly.

If you see some of my other posts doctors told me it eas colic /floppy larynx/ silent reflux.

He rarely cries, just wakes up so uncomfortable wheezy/chesty and can't get back to sleep. He sounds very hoarse but is never sick ... just occasional spit up. He will then only cry after about an hour of being awake which I think is pure exhaustion. He is such a happy boy otherwise. He does make a loud click when he feeds and so must be taking in so much air. I have tried other formula , bottles that produce less air etc. He constantly wants to feed which I think could be to soothe the acid in his throat. This then just makes his tummy ache really bad.

He is booked in for division in 2 weeks. Did anyone have similar and see improvement? I'll get it done for him regardless but just wondering If we have really identified the problem. He has had gaviscon but honestly all it did was add constipation to his issues.

I’m afraid it never helped my DC, it was done twice and we saw no improvement. Omeprazole helped a bit but Domperidone helped the most. DC also had CMPA though and a dairy free diet helped as well.

Hey @Nat888 have you had the procedure done and has it helped? My lo had his posterior tt done at 2 weeks. At the time I didnt notice a difference. Now at 4m, he has all the symptoms of it possibly having grown back (acid reflux, gassiness, wakes near every hour through night, distress at bf, chocking, I've had reduced supply and blocked ducts etc.). Up until recently, the docs refused to look into things because he's been putting on weight. They would just say he's got colic, then he was given omeprazole and gaviscon for the silent reflux which made him worse. Gaviscon kind of works, but the trade off is constipation and he's woken from the discomfort many a time too. So it's been very frustrating/ stressful journey for us so far. Anyway, we're seeing someone privately to look at him on Thursday. I was just wondering whether the procedure has made a difference for your lo?

@Mayyy two of my three kids had their tt snipped. First wasn't snipped as doctor convinced us that it stretches with time. In our case it didn't but we didn't know then. He fed hourly, woke two hourly until about18 months, had reflux, eczema and allergies. I cut out a lot of stuff from my diet. I also remember that four months is a tough time with everything going to pots.
With the younger two, snipping made a huge difference with latch and general feeding. Hope you get answers on Thursday, hang in there.

Gaviscon and omeprazole will make baby constipated. Talk to pharmacist, they may give you a stool softener for the baby.

They didn't ent up cutting it - when they checked it its in a place that apparently makes it quite dangerous - because they thought he had good tongue movement they left it.

His silent reflux seems to have gotten a lot better actually but his gas still gives him a lot of problems. Thinking of taking him private for it

Sorry - no story of success :( hope things go well Thursday for you x

@mishmased Thanks for your repky. May I ask whether it was a posterior tt that they had? I am surprised how common tt are! With the two who had it snipped earlier in life, did you notice a difference right away or did it take a few days/ weeks? I was told that tt become more apparent at 4 months as they no longer feed driven by hormones, but driven by hunger instead (though I've not found further info on this). I've also cut dairy out my diet. I'm not too sure whether it's made much of a difference as he still pulls off complaining, but there seems to be less screaming. It's only been about 9 days, so will reintroduce dairy this weekend and see if there's a difference. I heard following dairy, eggs are the next most common allergy, so will cut out that next if its not dairy. I've got lactulose from the doc as a stool Softener, but have been reluctant to use it as the label says a side effect is that it may delay babies from learning to pass poo themselves.

@Nat888 Glad to hear his reflux is better! I know a lot of issues are from and immature digestive system, doesn't make it any less easy. Has his sleeping improved alongside the reflux? I hope you get more answers going private xx

My little ones is posterior. He has slept a lot better 9 -3 usually then about 3.30-8 so good for his age.

We didn't really change anything so I think its jsut got better with time but yeah- definitely think it needs a second / private opinion

Tongue tie revision made a massive difference to my then 8 week old. As did growing out of the floppy larrynx by about 20 weeks which can cause them so much discomfort, don't underestimate that as well as reflux.

Yeah I would have hoped they would cut it but the ENT said his tongue movement was really good so she didn't think it would help.

His wheezing and noisy breathing is also a lot lot better - he sleeps really well now.

He is still taking in so much air and we are still dealing with that but he is a little less bothered by it now.

I am following up with the TT privately but at the moment he is so much more content i actually forgot how bad things were 4 weeks ago! I'm enjoying the extra sleep right now... until it all turns to shit when the 4 month regression hits

Both of mine had posterior TT which I had to pay to get revised. Have yours all been checked for lip tie as well? They often go hand in hand.

No lip tie with my little one

@Mayyy the two weren't posterior but the latch was pretty bad. With my first he'd latch on for 5 second feed really fast, come off and start screaming. Back arching and he also has silent reflux so no vomiting but you can hear the food going up his throat and he swallows back. So his throat gets burned when the food goes up and again when it goes back down and the screaming that followed was heartbreaking.
My first was confirmed posterior by a dentist at age 4 (he's 9 now) and it was meant to be really bad that dentist asked how was he fed. He still has it as to get it snipped once they get over 1 is around €1000 minimum under GA. It doesn't affect his speech or anything but when brushing his teeth he cannot stick out his tongue to properly clean it. He is allergic to dairy and eggs, can now tolerate most forms of dairy except milk. He eats pizza, ice cream, milk chocolate.
Eggs he still cannot tolerate much as such we're still at the bottom of the egg ladder. I had to pay privately for allergy testing at 6 months as they refused to test before then and my GP wasn't interested as he's breastfed and bf babies do not react to dairy milk proteins in their mothers milk 🤦‍♀️

I notice symptoms with second at 1 week old and got snipped by a dentist at 3 weeks old. We were giving massage exercises to make sure it doesn't reattach (this was 7 years ago, apparently massages are no longer recommended). The change was very evident a few days later and he fed no issues.

Third same story but snipped by a doctor at 3 weeks slight improvement but she had a bad latch and at age 15 months now her latch is good but not great. She had omeprazole for reflux and lactulose for constipation that followed. Bowel movement wise she's very regular.

Do you combine feed or was baby given some dairy in the early days? My first was given 10mls of formula on day 3 as he lost so much weight.
Interestingly younger two do not have any allergies, there was instructions by my consultant on both pregnancies to use hypoallergenic milk for any babies if I was unable to breastfeed.

Apologies for the long post, this will pass.x

I forgot to add, I was speaking to a midwife and she said there's the thought that the rise of tt could be due to the intake of folic acid post 12 weeks in pregnancy. But there's no solid research to prove this.