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Children's health

Tongue tie one year old

20 replies

Leighanne30 · 11/03/2017 14:28

My now one year old was born with a significant tongue tie which no one, not one health visitor, midwife, doctor, managed to notice. Breast feeding was horrifically upsetting and in the end after three weeks of not latching and a huge weight loss in my daughter, I turned to formula. I had never heard of tongue tie and so I had no idea this was the reason my baby couldn't latch on, and none of the health care professionals even mentioned it.
When we began weaning I noticed it, and after going to the doctor and finally getting referred to an ENT surgeon, he confirmed she does have a significant tie. Now, here is my concern and dilemma. He said that because of her age, general anaesthetic is not practiced. Therefore, he would cut the tie without any just as you would with a newborn. This makes me so so nervous and uoset about the pain it will cause my daughter. My question to all of you other lovely parents is, have any of you got any experience with tongue tie at this age, specifically going through having it cut without anaesthetic? Thank you

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SerialReJoiner · 11/03/2017 14:37

Hmm. No medication at all? Can you get a second opinion?

I've had two tongue.tied infants get their tie snipped/released, and although they were in pain afterwards it was very short lived. Within minutes they both seemed fine.

How would they actually do the procedure? How would they keep her still? Seems like it has the potential to be very traumatic. I'm assuming her tongue tie is affecting her ability to chew, swallow and/or speak? If that's the case it is worth doing.

I'm really upset on your behalf that it wasn't caught sooner. The NHS fails so many mothers and babies in this issue.

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AnoiseAnnoysanOyster · 11/03/2017 16:57

I thought over six months it was done with a GA. Unless they use a local.

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Leighanne30 · 11/03/2017 19:09

The surgeon advised that General anaesthetic isn't used on infants under three (unless unavoidable in other necessary surgeries) and local is too difficult to give to a squirmy baby. Therefore he does it without. He advised that he would do it there and then and has done it on children her age.
I'll never forget for the rest of my life that I've missed out on breast feeding because no one thought to look. I feel like I've failed her and myself. SerialReJoiner how old were your children at the time?

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SerialReJoiner · 11/03/2017 19:20

You did NOT fail. You were failed by the HCPs.

My DD was 4.5 weeks old when she was diagnosed, and I diagnosed my DS myself when he was a couple of minutes old. Grin Once burned, twice shy.

Undiagnosed tongue tie is a national disgrace.

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flutterby77 · 11/03/2017 20:04

My son was 18 months when he had his posterior tongue tie done as it was detected late. It was done without general anaesthetic, I just held him when they did the procedure but he is small and they lasered it not a scalpel. I'm in Australia and they normally do ga for kids over 18 months.

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theothersideoftheworld · 11/03/2017 20:17

Op I have a 2 year old with tongue tie. BFing was awful for me too, but he was born abroad so it wasn't dealt with then. I thought over 6 months they used GA. I'm going to wait until his 2 year check and mention it then.
I know how you feel though, every time I see it it reminds me what an awful time we had in the early days of feeding .

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2fatducks · 11/03/2017 20:40

I'm in the Uk (SE) and had my daughter done under a GA and she was between 18m-2 yrs. I had said since she was born there was a problem, but as I was B/F fairly successfully I was dismissed as neurotic. --
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It was an OOH Dr who finally confirmed what I'd thought and said not to worry with tongue tie, the only problem she would have was with oral sex when she was older Shock.

When I finally saw a specialist he said the only reason I'd been able to B/F was because she was my third. He also admitted to me that they tried to put mothers off getting it done because of the cost to the NHS.

This was a child who would go blue and projectile vomit after feeding and since having the procedure has a longer tongue than anyone else in the family.

It IS done under GA and I would push for it as I imagine it's due to 'cost' rather than anything else. They also told me 6 months was the cut off too. I'd get a second opinion re the GA.

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Bythebeach · 11/03/2017 20:44

My third born had tongue tie that really affected his weaning and speech but I did breastfeed him - perhaps because he was my third. His was cut at 21 months under GA in Southampton. I emailed a particular consultant directly to get it done.

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Leighanne30 · 12/03/2017 12:49

Flutterby77 are you able to tell me more....are you glad you did it, how was your son following the procedure etc?
2fatducks that's really interesting you had GA, how was the procedure for you guys and would you donit again at her age if you had to? Buythebeach your experience also sounds similar, are you glad you went through the procedure?
It is so so common I have no idea why they don't routinely wxamine for it, I feel it would save a lot of heartache

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AnotherTimeMaybe · 12/03/2017 15:48

After 6 months it gets really really thick, it's not the same as newborn
I had my ds2's done 5 times!! Yes it came back again and again and again at the end I gave up
2 out of these times it was done with an ENT who said the latest she'd do without GA would be at 6months
Really do get a 2nd opinion

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Bythebeach · 12/03/2017 21:39

Really glad we did but wish very much we'd done it earlier. He had a proper heart shaped dent at the tip and couldn't extend his tongue beyond his teeth. He gagged and vomited constantly when weaning and he barely ate solid food and it was harrowing. After tongue-tie was cut, everything got better and I wish so much I'd organised it earlier.

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Leighanne30 · 16/03/2017 15:04

Thank you everyone for all of your feedback, it's definitely useful to hear the experiences of others. We have our appointment on 23rd of this month and I'm obviously hoping that all goes well.

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weechops · 16/03/2017 15:16

Just to offer a different experience - my second baby had(has) tongue tie. It wasnt noticed by midwives/hv and like most of you, we had problems breastfeeding. I used formula and never had any problems with bottles. It was never mentioned by any health professionals that it should be snipped, and I knew nothing about it myself. He's 6 now and it's still totally heart shaped. His speech is perfect, and he's had no issues at all. Can even lick an ice cream Smile Just wanted to reassure you that it can be fine sometimes too Smile

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Leighanne30 · 16/03/2017 18:07

Oh wow weechops thank you so much for that, it's really great to see the other side of it, definitely food for thought :) it's extremely disappointing that so many babies aren't recognised as being tied when they should be. It would save a lot of feeding heartache! The main reason we have pursued it is because we don't feel as if our daughter is progressing with more solid food, I still have to blitz most things up otherwise she won't touch it. We are hoping a more free tongue movement will help that

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JammyGeorge · 16/03/2017 23:05

Hi, we had ds1 tongue tie snipped under GA when he was 18 months old. We are so pleased we did and he now has no problems and his tongue is a normal shape. He was a very messy eater and had a serious problem with drooling which has completely disappeared.

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ACatCalledFang · 19/03/2017 20:58

Sorry to see we're not the only ones - my son has an 80% tongue tie which was not diagnosed until past one year. He's now 18 months. We had a lot of issues with wind and so on in the early months but are still breastfeeding.

I'm not sure of the extent to which it's causing an issue - he's a fussy eater but more than capable of eating what and when he wants to Grin. Some discomfort feeding now, which the lactation consultant thought was due to his lip tie. But nothing major.

I have found it impossible to get any balanced information on whether or not to get it snipped, although my understanding is that it would be under GA because of his age.

Our GP pooh-poohed any suggestion that it might be worth doing at this age. The lactation consultant said it could cause serious digestive, speech and dental problems. The GP says the latter is not possible. So we seem to be divided between the mainstream healthcare professionals who know nothing about tongue tie, and the specialists who believe it's responsible for everything including Trump.

I genuinely have no idea what to do so am being ostrich-like. My main concern is dental development so plan to take him to a dentist within the next few months to see what they think.

I'm livid because we received no feeding support whatsoever despite being readmitted to hospital on day 5 with feeding issues and me raising stuff a number of times - nobody ever looked inside his mouth. It's a disgrace.

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flutterby77 · 22/03/2017 10:36

Sorry I only just came back on this. I did it because he had difficulty chewing and it didn't make much difference to that if I'm honest. He does have much greater mobility of his tongue though so that was good.

After the surgery he was fine immediately. We did stretches for two weeks and there was no reattachment.

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flutterby77 · 22/03/2017 10:36

When I say immediately, he was playing with toys two minutes later.

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Leighanne30 · 23/03/2017 13:30

So, we have just returned home from hospital after having 'the snip' and it was over in a second. She screamed and cried initially then was ok. She is a little upset but has just gone down for her afternoon nap. Does the worry ever end though??? I'm now worried about the healing, I've read that you're meant to do exercises to stop re attachment but the ENT said it was unnecessary. I'm also worried because he didn't delve back in to make sure there was no posterior tie, maybe because of experience he was confident but I worry about everything.

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Leighanne30 · 23/03/2017 13:32

I meant to say, thank you to everyone for sharing their experience. It has been most helpful.
ACatCalledFang I'm really pleased to hear you were able to successfully breastfeed, that's amazing and I do envy you.

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