Posterior tongue tie

[PeterPan]

That's it. Say it's diagnosed by an SLP and say they do the pre-exercises and determine they cannot get enough range of motion without clipping, what am I looking at? I know what she told me, and it's bad. ($$, surgery or laser, movement every 3 hours so it doesn't reheal, etc.) Any experience with this? 

And while I'm ok with it's a scam, don't do it, and all that, know that 1) I trust the thoroughness of this person, and 2) there's significant apraxia (motor planning issues) meaning that they're going to be a little more generous on the clip side to balance out the already has a hard time moving side, if that makes sense. Apparently it's significant enough that the poor tongue positioning has destroyed the phase 1 orthodontic work we did (yes, for real) and is leaving him hungry all the time. That's why we went in, because my kid is HUNGRY ALL THE TIME. 

So any experiences with this? 

What a long day btw. Like I've already done 10 years of apraxia therapy, then years of expressive language therapy, then years of IEP fights to get the funding, then years of learning how to do work myself because I couldn't get therapists to do what needed to be done even with funding. Now this. Three weeks of up every 3 hours moving his tongue so it can move better after the surgery and not go back together than another 3 weeks of slightly/increasing staggers but still mostly every 3 hours. 

I'm just numb. I can't even picture it in my mind. It doesn't even hurt or make me cry anymore. It's like dude, hey why not just lose sleep for 3-6 weeks. You've done everything else, lol.

Is that necessary in babies too?? Isn't that normally when it's found? 

[rebcoola]

We did it on youngest when she was a couple of months old.  The clip with a laser took about a minute.  It cost like $600 if insurance didn't cover it.  The exercises are by far the worst part.  We didn't do the exercise at night.

[busymama7]

Yes it is often found in babies with breastfeeding problems and honestly all babies should be evaluated.

It sounds so tough but absolutely worth it.  It is only a few weeks for long term, life time really, benefits.  Stock you freezer, clear your schedule and pretend you have a newborn.  

When my son broke his arm I was up every 3 hrs around the clock after his surgery. When my niece had hip surgery my sister in law was up every few hours all night for much longer than me.  It isn't fun but at least you can know it is coming and plan for it.

Good luck!

[Farrar]

My nephew had it done as a youngish preschooler or older toddler (can't remember exactly when and he was one of those kids who was huge so I keep picturing how big he was and it's honestly not helping me place his age, lol). It was needed and there were eating issues more than speech ones. No big deal. There were some exercises, but overall it was nothing. It helped him a great deal. But also, he was super young so heal time was short.

A friend who is an LC talked to me about doing this for babies for quite awhile at one point. One thing she said that really stuck with me is that from talking to super old timers in La Leche, she had come to believe that it might have been quite common at one point in history because it was rarely even recorded as a surgery so they didn't have reliable records to understand how routine it was. She said that back in the day, many breastfeeding friendly docs would say, oh, latch issues, yep, tongue, let's just do a little clip here, and boom, done. 

[Terabith]

2 minutes ago, Farrar said:

My nephew had it done as a youngish preschooler or older toddler (can't remember exactly when and he was one of those kids who was huge so I keep picturing how big he was and it's honestly not helping me place his age, lol). It was needed and there were eating issues more than speech ones. No big deal. There were some exercises, but overall it was nothing. It helped him a great deal. But also, he was super young so heal time was short.

A friend who is an LC talked to me about doing this for babies for quite awhile at one point. One thing she said that really stuck with me is that from talking to super old timers in La Leche, she had come to believe that it might have been quite common at one point in history because it was rarely even recorded as a surgery so they didn't have reliable records to understand how routine it was. She said that back in the day, many breastfeeding friendly docs would say, oh, latch issues, yep, tongue, let's just do a little clip here, and boom, done. 

Yup.  My mother in law talked about how her OB did it in the delivery room for both her kids.  Totally quick, totally routine.  It was just what was done.  

[busymama7]

5 minutes ago, Terabith said:

Yup.  My mother in law talked about how her OB did it in the delivery room for both her kids.  Totally quick, totally routine.  It was just what was done.  

So these are actually two different issues.  A frenulum that is visible at birth and can be clipped like that easily is not the same as a posterior tongue tie although they can occur concurrently.   Those types should still be being evaluated and fixed.  It is terrible that so many babies have trouble feeding and no one is screening for this. (well midwives and LCs are, but that doesn't catch but a minority). 

A posterior tie is more complicated and takes a different procedure.  Both should be taken care of when diagnosed for all the reasons in the OP. 

[BusyMom5]

My youngest had a posterior tie that interfered with BFing.  It was cut at 7 weeks (that was 7 painful weeks of me looking for help- I was a veteran mom, 6th baby, it took me weeks to find a Dr to cut it!).  It was just clipped with scissors in a peds office with lots of nursing afterwards and no exercises.  

I also have twins who had ties that I didn't notice until later (they could BF, it was just kinda difficult to keep them on).  They had them laser cut at a facial surgery center and it was $$.  I don't remember how old they were, probably 6 or 7.  The Dentist is the one who figured it out and referred us.  They did have a few speech issues, but had not been in therapy for it. They did have to do exercises,  but it wasn't hard.  If I'm remembering correctly,  making different letter sounds, funny faces in the mirror.

[Kfamily]

10 hours ago, PeterPan said:

I'm just numb. I can't even picture it in my mind. It doesn't even hurt or make me cry anymore. It's like dude, hey why not just lose sleep for 3-6 weeks. You've done everything else, lol.

Aww, I'm sorry. 😞 That sounds tough. Hang in there. 

[kbutton]

11 hours ago, PeterPan said:

I'm just numb. I can't even picture it in my mind. It doesn't even hurt or make me cry anymore. It's like dude, hey why not just lose sleep for 3-6 weeks. You've done everything else, lol.

Is that necessary in babies too?? Isn't that normally when it's found? 

I am so sorry! No experience, but hugs.

Did you have him with an LC or someone who would've caught it early? I thought you were kind of crunchy and didn't do much medical stuff.

That said, my older on probably had bottom and top lip ties that no one caught. His frenulum was tight right up to his teeth, but his full lips made it look like he latched fine (they even said something about him not having a tie because his lips could stretch where they needed to). BFing with him was an utter disaster, failure, and quite traumatic for me, but normal toddler falls while running took care of the tight frenulum both top and bottom. BFing my second kiddo with oral motor issues and jaw fatigue was a breeze by comparison (also not caught but LCs--we know it was an issue in hindsight because of subsequent diagnoses). 

I don't have a lot of faith in the local LCs--I think BFing might be too low here for them to see everything they need to see to be amazing. 

[EKS]

My father was diagnosed with this back in the early 1930s.  Apparently he wasn't talking as a toddler or if he was, no one understood him.  According to my grandmother, after the doctor clipped the frenum, my father immediately started to speak in full sentences.  As far as I know, there was no therapy involved other than the surgery.

[PeterPan]

16 minutes ago, EKS said:

My father was diagnosed with this back in the early 1930s.  Apparently he wasn't talking as a toddler or if he was, no one understood him.  According to my grandmother, after the doctor clipped the frenum, my father immediately started to speak in full sentences.  As far as I know, there was no therapy involved other than the surgery.

Ok, that's amazing. And that's what she's saying, that they're going to be extra generous on wanting it clipped because of the apraxia.

It really does explain a lot, like his constant low weight percentiles relative to height and how HUNGRY he was when little. Sigh. So we'll see. 

Well thanks for the stories ladies! I had no idea it was so common.

[Lecka]

I hope it really helps, and that the exercises go okay.  

I don't know why it is that sometimes it takes time to discover certain things, but I think sometimes it just happens this way.  

I hope it will really help!!!!!!!!!!!!!!!!!!

[Farrar]

12 hours ago, busymama7 said:

So these are actually two different issues.  A frenulum that is visible at birth and can be clipped like that easily is not the same as a posterior tongue tie although they can occur concurrently.   Those types should still be being evaluated and fixed.  It is terrible that so many babies have trouble feeding and no one is screening for this. (well midwives and LCs are, but that doesn't catch but a minority). 

A posterior tie is more complicated and takes a different procedure.  Both should be taken care of when diagnosed for all the reasons in the OP. 

Oh, that explains a lot. I thought they were the same issue and couldn't understand why - if it was as simple as that - that my nephew had to wait and have a surgical procedure for the tongue tie. It was still outpatient and not a huge deal because he was pretty young, but they definitely made much more of it than my LC friend seemed to make of getting a doctor to clip the tongue.

[caffeineandbooks]

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Edited May 23, 2021 by caffeineandbooks

[PeterPan]

50 minutes ago, caffeineandbooks said:

The part I want you to read is this: the clinic I used had recently begun to stitch the incision.  This meant NO EXERCISES. 

That would be AMAZING. I'll have to look for some more locations then, mercy.

[kristin0713]

My friend just had this done in the fall for two of her boys.  They are not babies...I want to say they are about 4 and 6?  Something like that?  The surgery was easy and they needed to continue speech therapy but their speech has exploded since the surgery.  She has not said anything about needing to wake them up to move their tongues. I hope it's quick and easy and fixes a lot of problems! 

[Amy in NH]

Not a scam.

Apparently my grandmother clipped my father's with her sewing scissors.

I remember my sister having hers clipped in the peds office when she must have been 3-4, and I had to have my oldest's done when they were the same age.  Wish they had done it in infancy, but it is what it is.  No extra exercises needed, nor waking anyone at night.

Edited January 15, 2021 by Amy in NH

[PeterPan]

3 hours ago, kristin0713 said:

My friend just had this done in the fall for two of her boys.  They are not babies...I want to say they are about 4 and 6?  Something like that?  The surgery was easy and they needed to continue speech therapy but their speech has exploded since the surgery.  She has not said anything about needing to wake them up to move their tongues. I hope it's quick and easy and fixes a lot of problems! 

That's wonderful to hear!! I think it's the type (posterior vs. regular/anterior) and the age. 

I'm still trying to do basic things like just seeing for myself how you recognize this. I feel silly that I can't just look at google image and understand it, lol.

3 hours ago, Amy in NH said:

No extra exercises needed, nor waking anyone at night.

Yeah I don't know. 

[PeterPan]

3 hours ago, Amy in NH said:

Apparently my grandmother clipped my father's with her sewing scissors.

Ack!!!!

[katilac]

5 hours ago, Amy in NH said:

Apparently my grandmother clipped my father's with her sewing scissors.

Well, you wouldn't want to use the kitchen scissors, that would just be crazy. 

[Drama Llama]

What is the connection between the tongue tie and hunger?  Is it that he's eating less at meals, because of inefficient oral motor patterns, or is it something else?  Has this always been an issue, or is the hunger of puberty an issue?  II think your son is between my two kids in age.  I have to say that I'm amazed by how much my kids can eat, especially his 13 year old. 

I would be concerned about apraxia making it very hard for him to learn the new motor patterns for speech after the procedure.  I'd want to make sure that I was talking to people who had expertise in each of the three places you're seeing a potential impact, speech, feeding, and dental, to rule out other options and find out what to expect, before moving forward.