Tongue Tie Story - already cut 3 times and back again

[mrjaz]

Thought I would share our Tongue Tie Story.

Our daughter was born at the end of October with a really bad Grade 1 Tongue Tie, it had a massive affect on her ability to drink and put on weight. The NHS in Swindon are just not interested in Tongue Ties and we would have had to wait 3 weeks to see an ENT Consultant, so as a result we went privately and the Tongue Tie was snipped by an Osteopath Louise Beland who is based just outside Oxford, who I must add has been absolutely fantastic throughout the whole experience.

As soon as the tongue had been snipped we saw a huge improvement in her feeding.

A couple of weeks later we returned for a follow up appointment and some more of the band was discovered and cut, things improved greatly and as a result we thought that our daughters tongue tie was completely solved.

Three weeks ago we returned for what we had hoped would be a final appointment and was really surprised to see that the tongue had returned. This time the tie was not flesh based but more scare tissue my wife’s family have a history of Keloids. We opted to have the tie cut away once more in the hope that it would not return. However, within the last few days our daughter has become very grumpy and it is painfully obvious to see that she is in a great deal of discomfort with her tongue.

Our Osteopath has refereed us to the Specialist in Southampton, who I thought would be really helpful. Sadly, after a long phone chat with him last night he has refused to even take a look at our daughter, as he feels that cutting it again will not do anything as the tie will probably just come back and he does not use laser, our Osteopath thinks that Laser should do the trick and destroy the tongue tie.

After spending many hours on the internet we have now made an appointment with Malcolm Levinkind in London to have the tie lasered in two weeks time, which will cost a cool £450.

Any thoughts or feedback would be very much appreciated.

It is difficult to put into words how frustrated we are with the NHS, from the start they have completely disinterested and despite many hours of research nodbody in the NHS will laser a tongue tie

[HumphreyCobbler]

I have been to Dr Levinkind and I cannot praise him enough. Were you properly advised about stretching after the tt was cut?

[mrjaz]

No we have never been advised about exercises.

It has only been since looking at Dr Leverkinds webste that I have seen about exercises.

[McBaby]

We had four cuts I total for dd1. We saw Dr helen Caulfield at the royal free - she is an ENT consultant. The first cut did not severe the tie fully then we had two lots of scar tissue forming. We had the cuts at 8,12,14 and 24 weeks the final cut was very successful and at 2.5 we have no issues with speech or eating and I did continue breastfeeding till 14 months without pain.

She felt the forth cut was successful as the scar tissue would no longer be active after the 10 weeks between cut 3 and 4 compared to the other three cuts which were is quick succession.

[mrjaz]

McBaby - were you treated on NHS or did you have to go private?

[HumphreyCobbler]

My ds had his anterior tt snipped privately at four days old, I couldn't wait for the two weeks the nhs wanted me to wait for. The midwife that cut the tie said she thought DS did not have a posterior tt. I also noticed a pronounced lip tie. No one seemed to know anything about this either.

After discussing the issue on here (Mawbroon being particularly helpful), I took him to Dr Levinkind who lazered his lip tie and the quite severe posterior tt he did indeed have. The stretching exercises were presented to us as an essential if we did not want the tie to reform.

[mrjaz]

Dont want to get hopes up to much but it does seem that Dr Levinkind could be the answer.

[HumphreyCobbler]

yes, fingers crossed for you!

I won't lie, I found doing the stretches quite hard work but it was worth it.

[McBaby]

We went privately as initially I couldn't wait six weeks! But she does see nhs patients.

We did the stretches religiously after cut 3 and it made absolutely no difference it still reattached!

[Jaz78]

In what way did you find the stretches hard?

My wife is partially sighted and she is concerned that she will struggle with them?

[HumphreyCobbler]

I found it difficult because ds hated it and I am quite squeamish
you have to rub the areas quite hard
but I managed to do it and you will too. I think I used my touch sense rather than my eyesight.

[Monikita]

I would go and see an IBCLC who specialises in tt and get the scar tissue tie reassessed in terms of width and depth (and get this written down) then take this to Dr Levinkind.

I don't want to dash your hopes but he revised DD2's ptt and it didn't make a difference, gave her breast aversion and also reattached (ddespite doing the stretches).

We went to Shailesh Patel and Katherine Fisher (from King's College Hospital) to get it redone as he specialises in scar tissue. He confirmed that there had been no difference because although the laser revision was probably deep, it probably wasn't wide enough and so was incomplete.
Mr Patel did a second one with scissors and we saw an instant difference with nursing and no aversion.

Good luck i know how traumatic this can be.

[mrjaz]

Monikita - was your DD's tongue scar tissue?

Which IBCLC did you go and see?

[Monikita]

Once a tongue has reattached after revision it's always scar tissue.

I have to say I am very angry on your behalf that the osteopath offered to do further revisions. She would have been trained to do an initial revision but not subsequent ones - scar tissue behaves very differently and requires a surgeon to perform the procedure. Finding 'new' tissue suggests that the first snip was either incomplete or reattaching (and please don't let your wife think the scarring is due to keloid propensity - I was told this same nonsense by the lactation consultant who snipped and resnipped DD1's ptt incorrectly. The mouth heals extremely quickly anyway, (especially in newborns, which is why the stretches are important) but there are some people who do heal very quickly.

The lactation consultant we saw with DD2 was Katherine Fisher (who works with Shailesh Patel at King's).

[anothernumberone]

Having had a horrible experience with TT I can only sympathise. I don't think our situation was ever resolved properly but feeding did improve. Proper positioning really makes a difference. I recommend always feed laid back I am lazy it suited anyway for laid bac

[anothernumberone]

Sorry posted too soon. Laid back feeding really helped.

[Monikita]

Sorry, I hope I haven't come across as harsh - I just know how traumatic this is for you, especially when poor weight gain is concerned and there are too many people with insufficient training offering tt revision.

[mrjaz]

Hi Monikta

Thank you so much for the honest information.

I must admit its not exactly what I wanted to hear but its better to hear it, I will speak to my wife and go from there.

Do you know if a laser would clear the Tongue tie?

We currently have an appointment with Dr Levenkinds that we cannot cancel £150 already paid but we are not committed to the laser...

We are based in Swindon so getting to see Katherine Fisher would not be an impossible option.

[beckworth]

Oh my goodness you could be me! We also had 3 tt divisions with Louise at 3,4 and 5 weeks, and then got by thinking things were ok-ish (the ish because I still couldn't get him to latch without nipple shields). Then at 3 months I went to a bfn drop in in Eton to get support with a bad case of bottle preference (had been feeding expressed at night due to long feeds), and they told me he still had a mild tt. A lactation consultant called Sarah March snipped it for the final time there. I've been back since and she said there is some scar tissue but no tie as such. We've since been able to get rid of nipple shields and are still EBF at almost 6 months. He's a little clicky feeding but there are no obvious other side effects. To be honest, I'm not sure if it was anything Louise missed. He was a forceps baby with a very tight jaw, she struggled to get into his mouth as he would just clamp down. At 6 weeks his jaw visibly relaxed, I suspect the rest of the tie possibly became more obvious then. Who knows. I'm also not sure if the 4th division made a difference to his feeding or not. I'd already noticed him getting more efficient just before we found out about the tt still being there at 3 months, so it could just have been time and age. I can highly recommend Sarah March, for what it's worth she says she doesn't like to do tt divisions when they are tiny as she often has to revisit. Not that that helps either of us now, but it's something I'll keep in mind if we ever have baby no 2 - tt seems to be genetic so I'm assuming we'll have the same challenges.

[beckworth]

Re- reading your op, I would ask are you sure the grumpiness is due to the tongue and not just a growth spurt/leap? Any other symptoms that she's having trouble feeding or anything? I only ask because as I said I'd already noticed my son becoming a more efficient feeder before the final division, and wouldn't have necessarily known there was still a 'problem' if it wasn't for going to the drop in on an unrelated matter. I still ask myself if that final division was necessary, poor mite, but we'd already gone so far down the line by then it seemed like we ought to finish the job.

[Monikita]

Laser is good for reducing scar tissue for subsequent revisions - in fact Levinkind did the final procedureon DD1 which gave her better mobility and allowed her to breastfeed (the previous botched revisions had left the underside of her tongue sealed up) - although looking back I now suspect he hadn't gone wide enough again as there was no improvement until her tongue grew at 6 months.

That's why I suggest getting a written assessment of the tie to show him - he has worked wonders for so many others and is very experienced. I wonder maybe if he just wasn't used to how wide our girls' ties were.

If you want to continue bf I'd strongly recommend seeing an IBCLC anyway, to ensure baby is positioned well for effective transfer.

[mrjaz]

Sorry cannot work out the benefit of seeing the IBCLC before Levinkind, what would a IBCLC do that Levenkind could not?

Baby is now being bottle fed, what do you mean by ' baby is positioned well for effective transfer'

Sorry for all the questions.

[Monikita]

Ah sorry totally missed that! if baby's bottle fed and that's how you will continue to feed then yes, an IBCLC is not really any use (an IBCLC will help with breastfeeding, how to position baby so they effectively latch on to the breast).

The only reason I suggested seeing one before Levinkind is that they understand the best how a restriction will affect breastfeeding.

Levinkind does assess the tongue in the consultation but seeing how he missed the width of the tie (but which was identified by a lactation consultant at DD2's birth), I just wish I had got her notes on it to give to him. It would have saved us a further revision.

[mrjaz]

Just to finish the story we went to see Malcolm Levinkind and he absolutely nailed it, he also spotted a lip tie, so did both at the same time.

We then had 3 weeks of Post Massage Therapy which was no fun but essential to stop the tongue tie from reforming and now the tongue has healed correctly

[amzy28587]

My LO didn't have her TT spotted till we got home from the hospital (even though I had trouble latching, mastitis and thrush! She had it revised by the NHS twice over a few months but with no improvement. Wen went privatley in May and have also been for some Osteopath sessions to help with the tightness in her neck/jaw caused by the PTT. It has improved massively since she was born but its still uncomfortable and feels tight. Any suggestions? I managed to wean off top ups and now EBF but I really struggle by the end of each day and sometimes just want to give up....but we've been through too much to stop now. I wrote a complaint letter to the hospital about the late diagnosis and poor procedure but the surgeon who did it is not taking any responsibility......I feel really low and want to make sure others mums don't have the same poor treatment that we had.