@ Inside the big “tongue-tie” business

[osulori]

As a SLP and CLC...holy mother could I rant about the lip/tongue tie overdiagnosis and all the issues mentioned in the article all day long and probably through tomorrow too. Unfortunately since it's such a hot button issue and a huge money maker, there are a TON of quacks out there who misidentify issues but don't have the clinical background to actually assess function and determine if there's a problem or what else could be causing it. I see so many little ones who had a tongue tie release but parents were given NO instructions for follow up and it makes me so angry-around here dentists seem to be the ones doing this the most but I know it can vary.

[picksthemusic]

I have tongue thrust and can stick my tongue out quite far (think Gene Simmons). I also have what some would consider a tie, which I've never had treated. I had to have speech therapy as a child for a rather bad lisp, and never once was my tongue tie thought of as a concern.

That being said, I did see a TikTok the other day of a woman saying that if you open your mouth all the way and you can't touch your tongue to the roof of your mouth, then you have a tongue tie and need it treated. Which... what? LOL She also listed the same ailments that it would solve (headaches, fatigue, etc). There were a lot of comments saying that even if you get your tie treated and don't do PT after or cranio-sacral therapy to retrain your muscles, it won't do any good and it's a waste of time/money.

I hate that our society still doesn't know how to deal with snake oil peddlers.

[osulori]

Dec 18, 2023 21:37:05 GMT -5 wanderingback said:

Fwiw to be an IBCLC there are specific qualifications to become one. To be a CLC there are certain requirements as well. From what I’ve seen health insurance reimburses for IBCLCs.
I’ve been meaning to do the work to become a CLC for about 2 years now.

Anyway, off to read the article.

I did the CLC certification in 2017 through Healthy Children Project and overall found it to be a pretty good course! They do a nice job of acknowledging what is backed by research and what isn't as much, which was definitely good. I did wish they had more information about breastfeeding in more medically complex patient populations but I understood why they just didn't have time with the way the class is structured so I made sure to get that with additional continuing ed that covered both my CLC and SLP CE requirements.

[BicycleBride]

I was born with a lip tie and it was left alone until I was in elementary school when I accidentally busted it myself. I don’t even remember how it happened but I remember extreme pain and bleeding. As a parent I think I’d pay $900 purely so my kid didn’t have to go through that.

[msmerymac]

As the parent of a 13 month old, I anecdotally knew this was out of control. People recommend that parents investigate tongue ties for everything from reflux to crying in the car seat.

Also, IMO, this is what happens when someone prioritizes their “breastfeeding journey” over just making sure the baby is fed and thriving.

[DarcyLongfellow]

Reading that article makes me angry about how little support women have after they give birth. Everyone deserves to have access to the kind of healthcare I lucked into where my kid's tongue-tie was fixed with the cost of an office visit co-pay and and about 15 minutes of a doctor's time. Too many people were having to suffer through in pain before. Now, apparently, people are being tricked into having an expensive version of the procedure done when it's not necessary.

My kids' tongue ties were cut with a pair of scissors in 2 seconds without any anesthetic (or even much crying) by a pediatrician who is also a lactation consultant. No expensive specialists necessary. (She also took pictures of my blistered, bleeding nipples to include in a presentation she was preparing to give at a conference. Her opinion was that usually the baby will find a way to get the milk -- but the mom will be the one suffering because a tongue tied baby makes the latch incredibly painful.)

This country will take any legitimate medical problem and find a way to turn it into a business and exploit people. Tongue ties on newborns are a real thing, but if you give people a financial incentive to over-diagnose them, they will. Then the pendulum will swing from under-diagnosing to over-diagnosing.

[sillygoosegirl]

Gosh, I remember the tongue-tie craze on BabyCenter 9 years ago. And these graphs would suggest it was only getting started back then. I remember thinking to myself, "How could there be something so common and so apparently fatal (for most of human history), and have it not been--you know--evolved to a much much much less common incidence?" The shit that people were being told to get tongue tie clips for were insane, just like in this article. And if one pediatrician, or LC, or pediatric dentist wouldn't do it for you, you were supposed to shop around. Thankfully none of the ones I ever saw thought my baby had a tie, but damn, I would have tried *anything.*

Interestingly, in an in person moms group I went to, co-run by a new LC, the LC talked one day about choosing NOT to clip her baby's tongue tie. She said the provider who initially suggested it to her was just so pushy, it gave her a bad feeling about the whole thing and she refused to do it. And everything was fine with her with breastfeeding her baby--anyway, and the promised speech problems if she didn't clip the tie hadn't materialized either. She was the only person I ever heard say, "some tongue ties don't need to be clipped." I mean given the way so many people online were talking about their miracle tongue tie treatments, and recommending tongue tie snipping for everything, it was... really surprising to hear it.

[scm1011]

Dec 19, 2023 12:10:28 GMT -5 msmerymac said:

As the parent of a 13 month old, I anecdotally knew this was out of control. People recommend that parents investigate tongue ties for everything from reflux to crying in the car seat.

Also, IMO, this is what happens when someone prioritizes their “breastfeeding journey” over just making sure the baby is fed and thriving.

I don't think that's fair. As someone who killed myself to exclusively breastfeed with kid #1 (and looking back wish I hadn't!) it wasn't about my "breastfeeding journey", it was about trying to do what society told me is what good moms do. The 'breast is best and here is why' messaging is STRONG as a new mom. I had bad PPA and felt I was failing my son if I threw in the towel. Nurses in my "baby friendly" hospital pushed it pretty hard. I was given a list of LCs when I left to contact if I was having trouble (not formula samples or other resources). 

I had my son's "tongue tie" lasered as a result. Who knows if he actually needed it, but I was an easy target for sure.

[sent]

Dec 19, 2023 13:27:49 GMT -5 DarcyLongfellow said:

Her opinion was that usually the baby will find a way to get the milk -- but the mom will be the one suffering because a tongue tied baby makes the latch incredibly painful.

The scant actual studies that there are on this topic show exactly this conclusion - cutting the tie makes it more comfortable for the mom.

Cutting it with a scissor or scalpel is how we learned about it in school. Super cheap to do it this way. The lasers were just beginning to come into dentistry at that time, mid 2000s. Lasers cost anywhere from $5K - $80K and have a higher cost associated with patient supplies used during the appointment. 

[jamaicam]

I'd be interested to know the rates of cutting tongue ties in the UK versus US. As breast feeding is pushing strongly in the UK, but medicine is not privatised so not the same incentive to undertake operations.

[basilosaurus]

Dec 19, 2023 16:13:10 GMT -5 jamaicam said:

I'd be interested to know the rates of cutting tongue ties in the UK versus US. As breast feeding is pushing strongly in the UK, but medicine is not privatised so not the same incentive to undertake operations.

This shows similar trends in Canada and Australia, no mention of UK. Yes, it's different than NHS in those countries, but they're closer to each other than to the US.

www.ncbi.nlm.nih.gov/pmc/articles/PMC10167863/

[imimahoney]

Dec 18, 2023 22:14:57 GMT -5 Poppy said:

The pediatric dentist who did ours didn't charge us. He was so kind to us clearly-nervous-first-time-parents, too.

Same. I paid a $25 office visit fee and that was it.

My daughter could not gain weight from breast feeding but could from bottle feeding. I had no interest in pumping and she was milk/soy allergic so only the $$$ formula was an option.

I was ready to try the lip tie revision before moving on to something more time consuming and/or expensive.

[kitty]

Dec 19, 2023 13:27:49 GMT -5 DarcyLongfellow said:

My kids' tongue ties were cut with a pair of scissors in 2 seconds without any anesthetic

This is what we did with DS2 at the ENT because I knew right away that he had the same tie as DS1 based on how the latch felt and pushed for an early referral from the pedi when he was 2 weeks old. However, it's my understanding that they only do it this way on very young infants and at some point it becomes a more significant procedure.

I didn't realize my older son had ties until his top teeth grew in and there was a piece of tissue down in between them that started at his lip. I had struggled a lot with breastfeeding him and keeping him latched. I couldn't leave the house with him for much of my maternity leave because he popped on and off so much I needs towels ::plural:: every nursing session and sometimes a change of clothing for both of us. The LC at the pedi told me the issue was me - she said I had oversupply and suggested block feeding which didn't help.

When we saw the lip tie, I did know from being on mommy boards that they often go together with tongue ties. I went to an ENT who diagnosed him with both ties and wanted to cut them with a scapel in the OR under general anesthesia. I was leery about putting him under at such a young age but I did want it revised because I planned on extended BF like I did with DD and wanted to improve his latch. I found a dentist who did the laser procedure without putting babies under. He was a semi-sketchy tongue tie factory/diagnose via emailed photos kind of provider so I never would have trusted him for the original diagnosis. But I already had the diagnosis from an ENT practice that I trusted more and it gave me comfort that he did so many and had been for a long while. I figured he knew his laser and was good at it. The instant they put DS1 back in my arms after the laser and he latched it was so.much.better and only continued to improve as the cut healed. I guess we got lucky and had a great outcome. My dental insurance did pay for part of it, maybe 60%?

Getting it done at 2 weeks was way easier and cheaper but I didn't know in time with my older son. Both DSs have articulation errors still at age 7 and 10 so go figure.

[loira]

This is timely because I've been seeing a lot more tongue tie content pop up on TikTok, which I didn't pay much attention to because it sounded pretty woo (tongue ties are apparently the reason for everything from jaw clenching to migraines to shoulder pain). I guess it's trending though. I have a tongue and lip tie and neither have affected my speech in any of the languages I speak, but I can see how they could potentially.

DD did have her tongue tie clipped by her doctor as a baby but it didn't end up helping with nursing. She also has a very strong upper lip tie that her dentist said will likely need lasering before she gets braces, which she will undoubtedly need. I think her lip tie may be responsible for her trouble pronouncing her Rs in English, but at nearly 8 it's not very noticeable so I probably wouldn't do anything about it if not for her dentist's recommendation.

[mrsukyankee]

Dec 19, 2023 16:13:10 GMT -5 jamaicam said:

I'd be interested to know the rates of cutting tongue ties in the UK versus US. As breast feeding is pushing strongly in the UK, but medicine is not privatised so not the same incentive to undertake operations.

It can only be done by NHS workers (doctor, nurse, midwife) so that cuts out a lot of options. As the NHS is currently struggling, I'd say that rates would be lower here as they tend to only do things if it is utterly necessary. I tried to search for answers about rates but really couldn't find much. 

[heygrey]

I was searching for stats on Canada and found an article from two years ago, very similar to the OP article. Basically, it’s being diagnosed by people who aren’t medical professionals and done in a for-profit setting.

beta.ctvnews.ca/national/health/2021/10/30/1_5645693.amp.html


DS had his tongue tie clipped in 2014. It was noticed by my midwife, diagnosed by an ob/gyn, and the procedure was done by the OB. It was way more of a process for us than either article indicates. Everyone I worked with wanted to make sure it was the right choice to help with his feeding issues. It made a night and day difference for DS.

[pugz]

It's interesting to me that 11 years ago when I had my first, there was like 1 pediatric dentist that did the laser revisions in KC. That was who EVERYONE in the metro went to. Now when I see the topic come up in local moms groups there are lots of options.

We did a lip tie revision for my youngest but it was not for BF reasons. When her top two teeth came in it was like WHOA, huge gap there because of the tie. The dentist said it was so thick it was unlikely to detach on its own so we lasered it when she was like 16 months. But now 6 years later she again has a huge gap between her front teeth. Child is destined for braces. She has speech issues like my husband and I did but no way of knowing if leaving that lip tie would have made it worse.

Also when someone posted this article in a local group yesterday the response was not positive, lol.

[mysteriouswife]

DD had a lip tie that was revised at 14. She has complained for years she couldn’t bite into apples or large items. We just assumed it was age and learning to eat. Then around 12 we noticed she could barely smile. We would fuss about smiling in photos. I felt like a jerk when we realized she physically could not bite or smile. No clue how much of an improvement it will be until she is out of her braces. The oral surgeon was surprised she didn’t struggle with straws and eating as a baby. I don’t know how much it cost us since she had 10 teeth pulled at the same time. Poor kid has a jacked up mouth.

[arehopsveggies]

My sibling had to get his done as a teenager, and was miserable. So both my kids got it done as babies to spare them that.

[wise_rita]

Dec 19, 2023 15:46:33 GMT -5 scm1011 said:

Dec 19, 2023 12:10:28 GMT -5 msmerymac said:

As the parent of a 13 month old, I anecdotally knew this was out of control. People recommend that parents investigate tongue ties for everything from reflux to crying in the car seat.

Also, IMO, this is what happens when someone prioritizes their “breastfeeding journey” over just making sure the baby is fed and thriving.

I don't think that's fair. As someone who killed myself to exclusively breastfeed with kid #1 (and looking back wish I hadn't!) it wasn't about my "breastfeeding journey", it was about trying to do what society told me is what good moms do. The 'breast is best and here is why' messaging is STRONG as a new mom. I had bad PPA and felt I was failing my son if I threw in the towel. Nurses in my "baby friendly" hospital pushed it pretty hard. I was given a list of LCs when I left to contact if I was having trouble (not formula samples or other resources). 

I had my son's "tongue tie" lasered as a result. Who knows if he actually needed it, but I was an easy target for sure.

I think you two are saying the exact same thing.

[basilosaurus]

Dec 23, 2023 21:23:01 GMT -5 arehopsveggies said:

My sibling had to get his done as a teenager, and was miserable. So both my kids got it done as babies to spare them that.

this is the same bad justification people use for circumcision or removing tonsils. Prophylactic removal of organs of skin in infancy because of potentially rare issues and harder recovery when older is not what we should be doing in the 21st century.