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Tongue-tied toddler - any experiences?

(25 Posts)
StormyBrid Fri 17-Jul-15 09:55:55

DD was diagnosed with a posterior tongue tie yesterday. It doesn't appear to be causing any speech issues, but we've had feeding problems right from the word go, and they're still ongoing. She gags on food a lot, has trouble chewing, and eats an incredibly limited diet because even though she's getting more willing to try new foods, they're pretty much always too much discomfort and effort to bother.

The GP yesterday indicated getting it snipped was unlikely, as it's not (yet) causing any speech problems. We've been referred to SALT to see if they can help. It's going to be a long wait and I have a sneaking suspicion they're going to refuse to cut it.

Has anyone had experience of posterior tongue tie in two year olds? What did you do, and what was the outcome? Am I going to have to beg, borrow or steal and get it snipped privately?

GezFox Fri 17-Jul-15 12:55:27

I would go private rather than wait. We did with our 10 day old son who was unable to feed . Never looked back. Really don't understand why they won't do it as it is no harm to the child

Gobbolinothewitchscat Fri 17-Jul-15 13:10:47

My DH is a dentist and s tongue tie practitioner - interest sparked as our DC were seriously tongue tied!

My understanding is that it's slightly more complex dealing with this issue in older children and they would usually do it under GA - hence why there's some hesitation to do it on the NHS

Your dentist is probably a good source of advice too. He or she should be able to assess whether it will cause oral hygiene issues which also need to be taken into consideration.

In our area, dentists can refer on the NHS to have it sorted so they might also offer to do that which could help.

Obviously, if not, private is an option but GA will probably be required which will bump up the cost

Gobbolinothewitchscat Fri 17-Jul-15 13:12:15

gez - also agree with that have no idea why it's not assessed and sorted neo-natally. Such an easier process. I am pregnant with DC3 and DH is going to have a look pretty much immediately!

StormyBrid Fri 17-Jul-15 13:33:57

I tried to have it assessed and sorted when she was tiny. Unfortunately the GP we saw then clearly had no experience of posterior ties. Had to give up bf on day five because she couldn't get a decent latch and so was starving - no one checked for it then, no one mentioned the possibility even. Then at a couple of months old she had a lengthy phase of screaming on pain after barely an ounce drunk - no one investigated why, no one mentioned tongue tie, no professionals seemed to give a damn because she wasn't losing weight, just flatlining across the weight chart. As for weaning... Nightmare. She's twenty eight months and it still doesn't feel like we've successfully introduced solids.

She's okay with sloppy things, so long as there are no bits. She gags and coughs a lot while eating. Most foods, she puts them in her mouth and then just lets them fall. We've made so little progress in the past two years, it's ridiculous.

I just feel like SALT isn't going to be a great deal of help. And then we'll end up having to fight the NHS to have it snipped. Sorely tempted to go private.

Gobbolinothewitchscat Fri 17-Jul-15 13:46:36

Most GPs/paeds have no idea about diagnosing tongue tie. They tend to think that if the baby can suck, they're fine and that is not the case bitter experience

Like I say, the dentist could be a good ally for you so I would make an appointment and see if they can assist.

StormyBrid Fri 17-Jul-15 15:36:25

Dentist booked for Monday morning. Fingers crossed it's a productive appointment.

GezFox Fri 17-Jul-15 16:59:19

I was fortunate as it was only a friend in nCT class who had a baby who was tongue tied and realised that they could not BF. I asked to have it cut before being discharged after birth but the doctor said it was only mild and shouldn't present any issues . The HV who saw him five days later said it was quite a severe one!!!! Called the labour ward back and asked if I could come back in and she said no as now an outpatient and its August so wait 3 weeks for everyone to be back off hols! Hence the need to go private. Pretty rubbish really.

StormyBrid Fri 17-Jul-15 17:10:50

"Shouldn't present any issues" - unless they have a crystal ball, how on earth would they know? Over the past few days I've read about severe ties that caused no issues, and minor ones that caused no end of trouble. Given how simple it is to treat neonatally, I just don't understay why it isn't routinely checked for by qualified and experienced people.

mawbroon Fri 17-Jul-15 17:31:21

Ds1's posterior tie went undiagnosed until he was 6yo. It wasn't until I started learning about tongue tie that I realised how far reaching the problems can be.

It affected his Orofacial structure (high palate, under developed mid face) which in turn lead to sleep problems, mouth breathing, orthodontic problems to name a few. He also had a curve in his neck, possibly from the tension of the tie and/or the posture adopted by mouth breathers. This had a knock on effect on his hips, knees and ankles.

He also had ent problems, with some hearing loss and reflux like symptoms. He found chewing and swallowing difficult and refused many foods.

He is coming up for 10yo now and revision, orthodontics and osteopathy have resolved every problem.

My advice would be not to rush in, but to learn as much about it as you can before finding somebody to help who really, really knows their stuff and will make a good job of it first time (sadly this is the voice of experience)

That's probably not going to be NHS btw.

General is not required if the tie is revised by laser. In fact it is preferable that the patient is awake so that tongue function can be assessed as they go.

It is a minefield and sadly the 'only matters if it affects breastfeeding or speech' brigade are all too common.

Gobbolinothewitchscat Fri 17-Jul-15 17:56:08

I agree - do plenty of research. There are mixed views on laser.

It's good that you have the appointment with the dentist on Monday as that should give you a starting point

Ktmummy1 Fri 17-Jul-15 18:22:09

I'm a SLT and it's not within our remit to snip tongue tied at all not to recommend it. We also do not diagnose tongue tie. I would return to your GP or health visitor and ask to be referred to appropriate professional. In our are this is ENT.

Ktmummy1 Fri 17-Jul-15 18:22:49

*nor to recommend it

StormyBrid Fri 17-Jul-15 18:35:29

Kt, the GP referred us to SALT because she thinks they may be able to teach DD how to, for example, chew. She's in favour of investigating that possibility before going down the surgery route. Does that sound like SALT may be helpful at all?

mawbroon Fri 17-Jul-15 19:10:18

She most likely knows how to chew, but can't because her tongue is restricted!

StormyBrid Fri 17-Jul-15 20:39:14

I can ser my next thread is going to be titled "Can someone explain to me, in very small words, how one accesses private healthcare?"

Gobbolinothewitchscat Fri 17-Jul-15 20:55:50

I'm assuming that you don't have existing private health care cover?

If not, there are various ways:

1. Ask the dentist for a private referral to someone they know/recommend. If they don't know, you could ask them if they could check with the local community dentists to see if they know anyone.

2. DH is a member of the Assiciation of Tongue Tie Practitioners. If you google their website, you can search for members.

3. If you contact your local NCT group (should have details on the website), the local breast feeding counsellors often have recommendations - DH has had quite a lot of work this way

4. You could call up local private hospitals and ask if anyone does clinics and self-refer there

If you do decide to go down the GA route, you'd be best placed looking for a dentist or a max fax (a kind of hospital dentist - there should be some at the local private hospitals) as they will carry out the process where a midwife practitioner won't as they don't have the same private access to the hospital to arrange an anaesthetist and a bed for observations for your little one after.

Once you've found a practitioner you like, then it's basically a case of agreeing to the fees. Obviously there would be an initial consultation too

Hope this helps a bit!

StormyBrid Fri 17-Jul-15 22:22:31

Re: 2, I looked earlier and there's a consultant paediatrician listed at the local hospital. No private healthcare, but DD does have a wealthy grandparent who comes in very handy at times. Thanks for the info; I don't know anyone who uses private healthcare so it's all a bit of a mystery to me.

Gobbolinothewitchscat Fri 17-Jul-15 22:27:07

A paed would be good too re: hospital access.

Lots of luck - just makes me so cross that this isn't sorted out asap

StormyBrid Tue 21-Jul-15 08:51:58

Well the dentist was much use. I can just about forgive him not being familiar with the phrase "tongue tied" because he's not English. Nothing he can do now, just wait and see if it causes problems.

It's already causing problems!

What now?

mawbroon Tue 21-Jul-15 23:33:51

Sorry, but not surprised to hear that the dentist was no help sad

It might be worth contacting Milk Matters in Huddersfield to see if they can point you in the right direction.

It seems to get impossibly hard to find help once they are past the baby stage angry

Myst97 Wed 22-Jul-15 10:28:16

Hi, You don't need GA if it is done by laser. Also age is irrelevant if done by laser. My son had a severe posterior tongue tie that was zapped by laser. The whole process took under ten minutes, he stopped crying as soon as he was brought back to me and was calm thereafter so can't have been in pain (I wasn't allowed to watch) and has been a different child since! Healing was also quick as the laser self cauterises and there was no blood. I can thoroughly recommend the dentist used (in London). As far as I am aware the only other laser dentist is in Huddersfield, not used him so no comment but I have details of both if you want. Costwise it cost 400 or so which covered the initial consultation, all costs of op and review of feeding straight afterwards. Personally I think it was well worth the cost. As for arranging it I simply phoned up and asked if my son's symptoms sounded likely. The dentist said come in and the rest is history! Good luck whatever you do. Ps My son was referred to salt and they had never heard of posterior tongue tie. They were surprised, fascinated and delighted when they saw the results at his review appt.

Myst97 Wed 22-Jul-15 10:31:07

Pps that cost is Feb 2014. I don't know if it will have increased in the meantime.

StormyBrid Wed 22-Jul-15 10:41:20

London's a bit far away, but if you could pm me the details of the Huddersfield one I'd be much obliged.

Myst97 Fri 24-Jul-15 08:35:15

UK Baby Friendly Initiative’s list of locations where tongue tie can be divided
Lactation Consultants of Great Britain - find a tongue tie divider

Mr Patrick Sheehan – Manchester based ENT Doctor who divides tongue ties on the NHS or privately
(experienced with posterior tongue ties and upper lip ties)

Dr John Roberts - Huddersfield based laser dentist who can divide lip and tongue ties. Cote Royd Dental Practice Cote Royd House Huddersfield HD3 3AN 01484 514451

I make no recommendation as I have not tried the above, it is simply information. (As I used the London dentist). Good luck either way!

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