Anyone know about posterior tongue tie?

[AngelDog]

I've suspected for ages that 2.9 y.o. DS1 has a slight TT. He had a SALT assessment today - the therapist said he doesn't have a tongue tie but has a high palate and very little lateral movement of the tongue.

I'm not sure I necessarily believe the therapist as I know that loads of HCPs are not very knowledgeable about tongue ties. She certainly didn't feel inside his mouth or lift his tongue at all, and I got the impression she was only looking at the front of his tongue.

I did try to get him checked by a local TT specialist IBCLC when he was about 2 y.o., but she wouldn't look at him because he wasn't young enough for them to do anything about it and I'd not been having difficulties with bf.

The lack of tongue movement is affecting his speech ('s' sounds are pronounced 'g' or 'k' at the back of the throat). He's going to have speech therapy and she's going to give me exercises to do with him.

Might there be a connection between poor lateral movement and posterior TT?

[mawbroon]

Yes, definitely.

Can he make his tongue into a pointy shape? DS1 couldn't do that until his posterior tie was revised and I think (but I'm not sure) that you need a pointy tongue to make the S sound.

DS1 also has a high palate (caused by the tongue tie, although not all high palates are) and has just got a brace to expand it (he's 7) to hopefully prevent him needing extractions when he's older and also to aid nose breathing and stop him breathing through his mouth. The high palate has also restricted his eustacian tubes and he has had a lot of ear trouble in the past too.

There is a really good tongue tie support group on Facebook, you will get lots of expert info on there.

[AngelDog]

Ah, thanks - I hoped someone like you would turn up. :)

I'm not sure about the pointy tongue, I'm afraid.

I'm pleased he's going to get SALT (he also has verbal dyspraxia apparently) but if TT is part of the root cause it would be daft not to get it addressed. My parents would pay for us to get it looked at privately, I'm sure.

Who was it that did your diagnosis? IIRC you had some difficulty finding someone who knew what they were talking about.

The SALT sessions won't start for another 6 months so I've time to do some investigating.

[mawbroon]

Yes, the first revision wasn't done properly, so we had to have it done a second time.

It was diagnosed by a dentist in Huddersfield who has trained with Dr Kotlow who did the second revision, but I am led to believe that he's only doing babies up to a year and kids over 6.

But I understand that there's a dentist in London also doing laser revision, also trained by Dr Kotlow.

After having had one bad revision, I would definitely say that it's worth travelling to get somebody who really knows what they are doing, and laser is much preferable to scissors for various reasons.

I can't recommend the FB group enough. It's where I got the help that I needed with DS1

Has he got any other tt things going on btw? Gastric problems, allergies/intolerance, ear problems, mouth breathing etc?

[AngelDog]

He does have lots of food allergies. No ear problems (though he had glue ear for a bit).

I don't think he mouth breathes, although only because when he's bunged up I can hear him snuffling at night.

I had suspicions about the size of his belly and it being bigger in the evening than the morning (I think your DS had something similar?) but it was hard to know whether I was imagining it or not.

I think BM was a big part of his diet - when I got pg his solids intake (which I wouldn't have said was small) rocketed. He is a very fussy eater and has become more fussy over time. He is a seriously messy eater and dribbles a lot (which the SALT said is due to the lack of tongue movement).

He's never been a 'good' sleeper, though I don't think he's had sleep aponoea (sp?).

He chews his fists / arms a lot - he often has teethmarks in them. Sometimes he says his teeth hurt, sometimes that his hands hurt, sometimes that neither hurt. The SALT suggested sensory issues - possibly related to the tongue / verbal problems. I'm going to raise that with our paed when we next see him in a couple of months.

[mawbroon]

Yup, all sounds about right for tongue tie.

DS1 has sensory stuff going on as well. Lots of tt kids do apparently.

[AngelDog]

I can't find the FB group (useless at technology). Do you have a link please?

I can get to London pretty easily so that dentist would be worth me finding out more about.

[mawbroon]

If you search for tongue tie babies support group you should find it. It's a closed group, but just ask to join and wait for admin approval.

[AngelDog]

Great - thanks.

I was thinking about gastric problems this morning, and a TT would perhaps explain the issues we had when weaning, which I'd forgotten about. DS had terrible flatulence from the point when he started solids at 6 m.o. It was especially bad at night, and he'd often wake due to needing to pass wind, and be unable to until he could bf. It never seemed to be correlated with any particular foods. I originally wondered whether we'd started solids too soon, but we did BLW and he was swallowing lots from the outset (although he didn't sit unsupported till 7 months) so I thought he was probably ready. And in the end, the problems with wind lasted till he was well over 12 months.

I think I need to make a list of all DS's issues! I don't think any one of them on its own is a big deal, but having started collating them all together, it does sound increasingly like a TT issue.

[mawbroon]

A list is exactly what I did. Like you say, none of it sounds terribly bad individually, but when you look at the whole picture, it is quite something!

Are you familiar with Brian Palmer's work?

[AngelDog]

I've not looked at Brian Palmer's stuff for a while, so will have another look at that.

Looking at pictures on t'web, I think DS2 has an upper lip tie. Certainly it looks very different from the Dr Kotlow photos of children with no significant frenulum attachment. Hopefully we'll manage to leave the house tomorrow in time to get to the IBCLC clinic to get him checked (though I'm not overly optimistic given that I had to do 1.5 hours of bf'ing before we could even get out of bed this morning... )

[AngelDog]

Well, the LC said that DS2 doesn't have a very restricted tongue but that it doesn't feel quite right to her, and the fact that I'm uncomfortable and DS1 has related issues suggest that it needs treating. So she's referring me to whichever doctor it is who does revisions around here.

I asked her advice about getting DS1 looked at, which would just be through a GP referral if we didn't go straight to someone like the London dentist (who is going to start doing revisions soon but isn't doing them yet). I need to post on the FB group and ask if it's worth bothering with the GP or not - I don't have a lot of confidence in the NHS with TT issues, and I'm twitchy about DS getting referred to someone who'd want to use anaesthetic as standard.

She agreed with me that it didn't sound like the SALT did a proper examination of DS - certainly not enough to know whether posterior TT might be an issue.

[mawbroon]

I would skip the NHS in all honesty. It is my understanding that the tongue function should be assessed during the procedure which is not possible to do whilst the child is under GA.