Intro

All content of this blog is my own opinion only. It does not represent the views of any organisation or association I may work for, or be associated with. Nothing within this blog should be considered as medical advice and you should always consult your Doctor.

What Is Appropriate Aftercare Following Tongue Tie Treatment? PART 1

NOTE: Tongue ties can be treated in children for various reasons including dental or speech problems.  This post pertains to treating tongue tie in babies (ie younger than 18 months) for feeding purposes.

PART ONE

In the UK there is currently considerable debate about appropriate aftercare following frenulotomy (treatment of tongue tie).  At one end of the scale is the do nothing approach, sometimes not even providing a contact number for parents.  At the other end is an intense schedule of lifting, stretching, "popping" and massage - the aim being to keep the wound open, using force to "tear" healing fibres apart if needs be.

In between are a range of practices: watching the wound but not touching unless significant tightening down occurs; tongue exercises; sweeping the area without pressure.

The general consensus from parents (and often infant feeding specialists too) is confusion. Who is right and what should they do?

I've split this entry into two parts; general discussion of aftercare, and coming up in part two, other things to consider.

Typically when it comes to intervention, the onus is on demonstrating a benefit; in this case that stretching/massage etc proffers better outcome than doing nothing, or waiting and watching.  We can then read through the pros and cons and make an informed choice.

Evidence:
This is where we hit the first roadblock because realistically at the moment there isn't any.

Different practitioners may claim their own clinical experience is evidence, but realistically it's not; it's anecdotal and not free from bias (if someone believes something will or won't work, this can inadvertently influence their judgement).

Their theories may be accurate and intervention important, but without published trials including controls and adjusting for other potential influencing factors, this isn't research but theory.

We must first decide how we define tongue tie and what the overall aims of the initial procedure are, so we have a basis on which to gauge outcome.

Which is where we hit stumbling block number two.

So let's start at the beginning.

When identifying a tongue tie initially, it's not  as simple as identifying a membrane and assuming all problems stem from that.

Many people have some sort of frenulum under their tongue.  Only when it appears tight or short, and impeding full tongue movement , can it be classed as tied or restricted.

To make matters more interesting, even if there is apparent restriction of the tongue this isn't always caused by tongue tie, and even if there is a tie this isn't necessarily the cause of the feeding problems.

Still with me?

The NICE guidelines state:
"Many tongue-ties are asymptomatic and cause no problems. Some babies with tongue-tie have breastfeeding difficulties. Conservative management includes breastfeeding advice, and careful assessment is important to determine whether the frenulum is interfering with feeding and whether its division is appropriate."
and
"It was recognised that breastfeeding is a complex interaction between mother and child, and that many factors can affect the ability to feed. Skilled breastfeeding support is an integral part of the management of breastfeeding difficulties."
I would ideally like to repeat this phrase a thousand times, so many people assume presence of frenum alone is problematic (even if they're not having any problems), and that as long as it's removed problems resolve.

This is why I assume there are now several practitioners treating frenums without needing any sort of referral other than the parents picking up the phone.

In the UK a rationale is required to perform tongue tie revision on babies, one can't just go about dividing frenulums willy-nilly.  It isn't just about what a frenulum looks like, but how it affects feeding and what problems result.  Yet we're in a situation where people are treating for a feeding reason, yet the parents have sometimes not seen a single person qualified in providing feeding support!  Nobody is ensuring adequate feeding assessment or that these mums have someone who specialises in feeding issues to go back to.

Once the frenum is treated, do we have reason to believe that post procedure we should focus purely on whether a single strand of tissue has reattached?  If many people have a frenulum, do we have sufficient evidence we need to be aiming for zero attachment in all cases? No.

A couple of cases spring to mind. First a baby just a few weeks old and mum contacted me regarding a third revision. The mum had been advised (after showing a photo) that the two previous surgeries had apparently failed.

Yet whilst there had been regrowth of tissue at the site of the cut frenulum and there were still issues, ultimately it wasn't the new tissue underneath that was the cause.

If I had seen that tongue prior to any treatment, I wouldn't have considered it tied - so why when it comes to regrowth should different rules apply?

Second was a slightly older baby.  All problems had resolved following treatment, but mum was concerned that she could see regrowth when she lifted the tongue.  Indeed there was a frenulum, but where is the rationale to treat further when life is sweet?

This means any research surrounding appropriate post procedure treatment has to define criteria. 

Is the treatment taking place to resolve feeding issues, or is it to obliterate any trace of frenulum with success being measured based on what we can see?

When it comes to promoting rigorous aftercare, I've heard the argument that lots of medical interventions aren't evidence based and yet work; that lack of evidence don't mean lack of efficacy.  Indeed this is true, but conversely neither can we guarantee lack of harm.

Whilst oral mucosa heals with a less fibrous response than skin, what if aftercare that involves "disturbing the wound" creates deeper scarring than doing nothing, increasing risks of palpable scar tissue and/or reattachment?

Do all babies despite age and position of frenulum need the same post procedure care, and is there the potential to improve outcome in some whilst causing problems for others by intervening?

Is there any risk of rigorous rubbing of a deep revision causing oral damage?  How much do tongue exercises help? How does watching and intervening later compare with forceful disruption from the start or doing nothing?  

Is there risk of causing further inflammation?  Is there an infection risk from rubbing a wound to the point it bleeds without sterile hands or gloves?

Are we absolutely sure this is necessary?

Without studies we simply don't know.  It seems different practitioners have different theories and I personally need more assurance than "because I say so!"

What I do know is that plenty of babies have suffered reattachment even with "hardcore" aftercare, whilst others haven't; similarly some frenulums never reattach even if mum doesn't do anything, whilst others do.

We simply are not in a position to say with any certainty that reattachment or unresolved problems are due to inadequate intervention by caregivers. For me that's just a guilt trip too far.

PART TWO HERE

19 comments:

  1. Thank you, thank you, thank you! I personally don't recommend any exercises post release for many of the above reasons but also because of the risk of oral aversion. I already see babies who refuse the breast (usually temporarily) post TT release and the thought of all this prodding/poking/stretching etc concerns me that we are not doing good but may very well be doing a lot of harm.

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  2. I am concerned about breast refusal/oral aversion too and just wish that those who advise aftercare of the wound site would engage and work with those of us who have concerns, rather than rudely reject our worries out of hand.

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  3. " one can't just go about dividing frenulums willy-nilly." - absolutely. A thorough history, a physical exam and observation of feeding is required to assess tongue mobility and the impact on breastfeeding. IBCLCs advising frenotomies based solely on photographs causes me a great deal of concern.
    In addition to the vigorous aftercare you have described, parents may be told that bodywork (pre and post revision) is absolutely necessary. It seems a great deal of pressure to put upon parents without evidence.

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  4. Beautiful! Thank you for keeping this discussion going. Your blog post is much more tactful than mine was - mine was pretty damn blunt! You are absolutely correct on all points. :) Standing Ovation over here... :)

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  5. Are we truly surprised with the confusion? Is that not part of parenting these days? Many care providers disagree on a variety of topics. Interesting to see a discussion on post treatment without talking about the treatment options and treatment provders themselves and how follow up might be different. There will be lots of confusion and opinions there, too. I think giving parents information and empowerment is key.

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  6. Is tongue tie treatment and aftercare "parenting"?

    I think it gets more complicated not less if we include treatment options ie laser or scissors. Particularly given we are told laser REDUCES changes of scarring/tightening down, and yet it is for the main those using/supporting laser who advocate intense aftercare.

    Couldn't agree more about information and empowerment - which is why I feel distinctly uncomfortable about the "moderation of information" that we're currently seeing online. Where anyone who questions or challenges certain practitioners are deemed "not helpful" and their comments or them removed from support lists.

    EG one member was banned from a Facebook tongue tie group for sharing this blog...

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  7. There are extremists out there in all walks of life who refuse to listen to what others have to say - especially if it 'seems' to or does contradict what they believe.

    But the fact of the matter is there are many ways to do things - from complete inaction to extreme over-action. For me the key is to find a middle-ground and look at each client as an individual and work from there. Giving the client as much information as we can is important and is part of being an IBCLC and following our SOP - which does NOT include 'moderation of information'.

    As to someone being banned from a group for sharing an information blog (and with DAMN GOOD information I might add) well that just reeks of unprofessional behavior and perhaps a bit of narcissism. But sadly I am not surprised as it happened to a few people who supported me and my blog on the same subject.

    Forget about giving parents the information - forget about giving them something else to read and be fully informed. Just make sure they only listen to what 'they' (whoever they are) want them to hear - not OK with me.

    Well, I for one will be spreading this around on my pages...an happy to do so. :)

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  8. In the absence of research, groups of practitioners get together and share best practice information and what seems to be working for them and when something doesn't work, they try to get together and figure out why. The practice of aftercare stretching came about after seeing failures on the more posterior ties (the ones that are further from the tip of the tongue) and everyone trying to use a background knowledge of science to ask why. Old style frenotomies rarely touch these tissues, and in older children and adults, a suture or two placed allows for secondary intention healing without stretching. Try that in a week old infant! So the laser can be used without general anesthesia to get a deeper release, but you are left with the raw tissue on the underside of the tongue and the upper floor of the mouth in constant contact. These will heal like a paper cut heals up to the point where the mobility of the tongue creates enough separation that they cannot heal by primary intention. For each kid this will be different. This is just basic science and needs no research validation to be true. And these releases are unpleasant enough for all parties, so I don't know any one doing them willy nilly without symptoms directing the care. It has been my experience that the stretching and the bodywork lead to better success than without. The younger the infant, the less the need for the bodywork has also been my experience. It is the moms who admit they really didn't stretch or couldn't that also reinforce the idea that stretching is important. Someone please show me successive cases of PTT treated without stretching or bodywork and what percentage of breastfeeding success was achieved and I'll change my treatment protocols. I am basing these protocols on science and the consensus of doctors treating these things. I would suggest the onus is on those who don't think stretching is necessary to provide me the research proving your theory, or even a hypothesis as to why those tissues would not heal back together if not kept apart. No one said this was easy!

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    Replies
    1. I know this is old, but I'm replying anyway. My son was born with posterior and submucosal ties. He wasn't gaining weight, had trouble staying latched on, and it hurt a lot to nurse (and my supply was going down). At 12 days old, those ties were snipped (cautery was used for the submucosal part). I asked the doctor about stretches, and he said it was unnecessary. I'll admit that I questioned that, having seen many posts like this saying it was necessary. Anyway, he had no bodywork done, and I may have stretched (extremely gently) once or twice only, and not until more than a week had passed. There was immediate improvement to breastfeeding; it did take some work, and his latch was never perfect with the high palate and all, but the pain was mostly gone and he was gaining. He has other health issues (born with gallstones), yet was gaining and doing well. He is still breastfed at age 2.5 years.

      I don't doubt that stretching and bodywork may be necessary for some, but clearly it isn't for all, even with posterior ties.

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    2. I'm so lost and I have no clue if you can see this, but thank you for this comment. My heart is breaking and I'm struggling so hard to complete stretches not knowing if it's really necessary.

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  9. QUOTE groups of practitioners get together and share best practice information and what seems to be working for them and when something doesn't work, they try to get together and figure out why

    But that isn't happening in the UK? And definitely not between people who are treating plus dealing with the feeding issues ie IBCLCs/LC.

    QUOTE Old style frenotomies rarely touch these tissues

    What do you mean by old style? Scissors? Southampton has been dividing posterior tongue ties since the 90's - but you're saying actually they were all pointless?

    QUOTE So the laser can be used without general anesthesia to get a deeper release, but you are left with the raw tissue on the underside of the tongue and the upper floor of the mouth in constant contact.

    So to clarify, you're suggesting the laser makes a wound more likely to reattach rather than less? Or that this applies regardless of treatment menthod? There is raw tissue, which is what makes the thought of "aftercare" even more concerning?

    QUOTE These will heal like a paper cut heals up to the point where the mobility of the tongue creates enough separation that they cannot heal by primary intention.

    But we have enough anecdotal evidence to know that assumption isn't always correct i.e. plenty of mums who have had laser revision haven't done the aftercare yet have had resolution of symptoms (just like with scissors)

    Also whilst an adult/infant may need a stitch, the joy of treating infants (according to Palmer/Sears/other practitioners) is because this isn't required? It's a much more simple procedure in a baby.

    If this is "basic science" and needs no research validation to be true, how does one explain all the parents who do "rigorous aftercare" and yet experience persistent regrowth (sometimes undergoing 3/4/5 revisions)

    QUOTE And these releases are unpleasant enough for all parties, so I don't know any one doing them willy nilly without symptoms directing the care.

    Ditto the "aftercare"

    QUOTE It has been my experience that the stretching and the bodywork lead to better success than without. The younger the infant, the less the need for the bodywork has also been my experience.

    I concur re addressing structural tensions, but haven't observed the link between age/requirements as some issues are related to positioning in the womb and/or birth trauma. If purely TT it would make sense these would increase over time.

    QUOTE It is the moms who admit they really didn't stretch or couldn't that also reinforce the idea that stretching is important.

    Is it? What are you basing this assumption on pls, anecdotal evidence?

    QUOTE Someone please show me successive cases of PTT treated without stretching or bodywork and what percentage of breastfeeding success was achieved and I'll change my treatment protocols.

    The two are surely not mutually exclusive, ie tensions can be addressed re osteo/chiro without stretching. I have files full of cases you describe and would be happy to chat further, as I'm sure will many other IBCLCs and BFCs. You could also contact John Roberts in Huddersfield.

    QUOTE I am basing these protocols on science and the consensus of doctors treating these things. I would suggest the onus is on those who don't think stretching is necessary to provide me the research proving your theory

    The consensus of how many Doctors treating "these things"? And were they all trained from the same source? Because there are many other Doctors, Paeds, ENTs, IBCLCS people treating them who disagree (I've contacted quite a few asking their opinion on this matter). Hence why evidence is needed.

    Furthermore sorry but I think when proposing an intervention, providing evidence to show efficacy is standard, you don't propose a theory and say I have no research to back it up therefore you need to prove I'm wrong!

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  10. How many TT regrow? We don't know. But it's a small proportion. I've been working with TT for years and can count on one hand the babies who have needed a second revision. Are we proposing subjecting all babies to the stretches just because of the minuscule chance the wound will heal down? Perhaps I've just been working with mothers whose babies have had their TT divided by very competent practitioners...and perhaps it's because we suggest the mother nurse frequently to keep the tongue moving and encourage the baby to stick his tongue out. I'm not a medic, so forgive my ignorance - a paper cut heals because both sides of the wound are static. How can a large, complex muscle like the tongue heal down if it's in constant motion?
    It's all very well you saying that experts get together to share best practice. We should compare, share and try out innovative new ways of working - that's a no-brainer. Except that is JUST NOT HAPPENING. Here in the UK there is no over-arching supervisory body, no central collection of statistics or case studies or any collation of evidence at all.

    Different practitioners have different stances - so what, you say? It seems to me that this is fine IF:
    1)Practitioners are sharing and learning from each other
    2)That they are honest with parents about the anecdotal nature of their recommendations
    3)That they are mindful that a parent cannot give informed consent if they are not appraised on all their choices.

    This last point concerns me the most - I hear stories every day of parents who have been told that they MUST do the stretches/massage or the TT WILL come back. This is neither evidence-based, honest or ethical and explains why some of us are so worried.

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  11. Having worked with babies who have tongue-ties for 15 plus years I can also say that the number who needed repeat revisions is significantly less than those who did not.

    I agree with AA in the question of age and needed bodywork. Needed body work is not 100% related to tongue-tie. It is primarily needed, in my experience, because of structural issues related to in-utero lie, pregnancy stress, labor and delivery stress, complications or interventions. A baby who is a few days old with a tongue-tie AND structural issues requires body work primarily to correct structural issues and secondarily for tongue-tie. If the structure does not function that needs to be corrected asap. Revising the frenulum to eliminate the tongue-tie is important, absolutely. And the body work will assist in (hopefully) full release of the structure as well as allowing full mobility of the tongue after revision. Babies who have only a tongue-tie often do well with bodywork follow-up but I have seen far too many who never needed body work with a revision to believe that every single baby MUST have it OR ELSE.

    It just isn't a one size fits all situation here and I think many of us recognize that but a few seem not to. In my professional opinion NO baby needs aggressive and painful stretching - ever. That type of 'aftercare' is in my opinion inappropriate and harmful to both caregiver and especially child. Having witnessed for myself the aversions that come with that type of 'aftercare', the emotionally traumatized parents and working my butt off to help them clean up a train-wreck that never should have happened in the first place - I feel very strongly on this issue. IF stretching is needed it CAN be done gently and with respect to the baby and the caregiver. Parents can play fun ROM games with their babies to help with mobility and tongue function. Oral aversion does not ever need to happen. According to a couple of LC's I have 'spoken' with, oral aversion IS worth the risk to prevent reattachment. I and many others however do NOT agree with this.

    I also do not believe that a frenulum 'grows' back or reattaches. From what I have seen in practice sometimes, in babies who are very tight in the jaw area, that when the frenulum is released, and then body work follows, more frenulum is actually allowed to come up - there is no regrowth - it is frenulum that was buried in the musculature. I could be wrong - but it's pretty clear that when we reclip these babies it is NOT muscle that is being reclipped - it is frenulum that seems to have suddenly 'appeared'.

    In this debate I feel we must keep a couple very important things in mind: First, There are many people with many viewpoints, experiences and expertise levels. We don't all agree on how it should be done - we just know that we need to help. There is no ONE person who has all the answers. There is no ONE right way to revise a frenulum (other than to revise fully and not leave a PTT after clipping an ATT). Scissors or laser - I don't find one to be superior to the other myself - I see it as the person using the tool to be key. I have seen really poor laser revisions and really poor scissor revisions. The best revisions in my area are done by a general practitioner dentist who uses a scissors and does the best posterior and submucosal revisions in town. There just isn't ONE RIGHT WAY. And secondly - Parent should NEVER be told they need to hurt their baby in order to heal them. We MUST remember to respect the child and the parent. We must remember to First Do No Harm - and telling a parent they MUST be aggressive with stretching and cause their infant pain and risk oral aversion IS causing harm in my opinion.

    Thank you for letting me ramble...I am truly looking forward to the second part of this blog...

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  12. QUOTE I also do not believe that a frenulum 'grows' back or reattaches. From what I have seen in practice sometimes, in babies who are very tight in the jaw area, that when the frenulum is released, and then body work follows, more frenulum is actually allowed to come up - there is no regrowth - it is frenulum that was buried in the musculature

    I think both are possible ie depends on the case. Sometimes (to me) it appears as "scar tissue" and is almost crunchy if divided with scissors. Other times I feel like you that more becomes visible x

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  13. AA - I will absolutely agree with the scar tissue thought. :) I was really tired while writing and neglected to put that in. That scar tissue from the more aggressive stretching can be difficult to get through - and I see what you do - it is almost 'crunchy'. Interestingly enough I don't see scar tissue like that when parents are NOT being aggressive and disturbing the wound in a major way.


    To be very clear: When I think of 'growing back' what comes to my mind immediately is the lizard whose tail regenerates after it is pulled off. In humans I don't think we have any body parts that grow back once they are removed. We don't regrow lost fingers, toes or appendixes... :) I hope that clarifies.

    Warmly,
    Jaye

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  14. My daughter had her 3 week old baby's tongue-tie cut privately last Friday. Today, two days later they had to use extreme pressure on the wound to keep it open. Hubbie did it, blood spurted so badly they almost went to A&E. Baby screamed in agony, all three were distraught and in tears. In a phone call to the specialist they were told this is normal and they now MUST do it again twice a day for the next week. I've spent the eve searching online for confirmation of this and no-where can I find it, there just seems immense confusion. This blog confirms what I think - it's too terribly traumatic for baby and parents, aside from the risk of infection from non sterile hands. Please tell me that I can advise them that it's NOT a must at all. Just the thought of a week of this horror is too much…
    Nana

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