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Upper lip tie

(7 Posts)
CCinDisguise Sun 29-Sep-13 11:44:39

I've recently discovered my DD has upper lip tie (& possibly a prosterior tongue tie), she's 15 months. We had a pretty difficult start to breastfeeding with extreme pain for me for around a month and with DD only ever feeding for shorts bursts of time. She was also quite an unsettled baby, probably due to wind caused by a bad latch. I never knew there was such a thing as upper lip tie and feel a bit cross that the professionals I went to for bf support & for support for an unsettled screaming baby never checked this!

But we are where we are and I had her seen by a dentist on Friday who has referred her to a specialist. I believe hers is pretty severe as it joins right down and under onto the palate, and she has a big gap inbetween her teeth. Apparently they do laser surgery but not until age 7.
I have concerns about this because by then she could already be dealing with speech problems and/or dental problems!

Does anyone have any experience of this? Especially with older DC's who have or haven't had treatment and the outcome of either of these?

mawbroon Sun 29-Sep-13 21:35:08

If you possibly can, you might want to consider going to Dr Malcolm Levinkind in East Finchley.

He was trained by Dr Kotlow who is a leading expert on ties, and will laser an upper lip tie and tongue tie if he thinks it appropriate.

DS1 had this done (not by Dr L, but by another dentist trained by Dr Kotlow) aged 6yo. He had a long list of problems which I have since learned are connected to his ties (upper lip, anterior and posterior tongue ties).

How is your DD's palate? Ties can often cause a high/narrow palate because of the restricted tongue movement. DS1 has started orthodontic treatment to expand his, otherwise he would be looking at multiple extractions in his teens. He has had his brace a year now, and the difference is amazing (he's almost 8yo)

Also, ask to join the Tongue Tie Babies Support Group on Facebook. There is a lot of knowledge and experience on there.

CCinDisguise Mon 30-Sep-13 19:49:25

Thank you for your reply mawbroon, I will see if we get anywhere with the referral and if not explore other options I think. My dentist said they wait until age 7, do you know why they wait soo long? Could I ask what problems your DS experienced and if they went after he had his ties sorted?

I think my DD may have a high narrow palate, it's not overly obvious but I think I recall noticing it a little when she was younger! I really should get off google as I keep scaring myself.

I'd already joined that fb group, It's a very active group!

mawbroon Mon 30-Sep-13 20:31:51

I have no idea why they wait so long. Probably because we are lagging behind on this topic in the UK.

Well, where to start with the list!!!

Slow weight gain and inefficient feeding as a baby (had never even heard of tongue tie, and nobody ever thought to look) I was lucky though, it was never painful, really terrible sleeping with bouts of apnoea, although probably not enough to be diagnosed with it IYSWIM, mouth breathing (high palate encroaches on nostril space) and enormous tonsils, congestion and hearing loss and ear infections (high palate encroaches on eustacian tube space), fussy eating, reflux appeared age 5yo but suspect he'd had it longer, allergies and intolerances (not directly connected to ties, but tied kids are often allergic).

Dental problems are evident now, but as I said in the previous post, we are having them seen to, but without it, he was heading for long face syndrome from mouth breathing, and multiple extraction in his teens. He will probably still need fixed braces, but hopefully not for as long as without his current treatment.

There are also other things that are common in tied kids, but they don't know for sure why. There is a suggestion that the incorrect swallowing action means that the vagus nerve is incorrectly stimulated which could have quite a lot of implication. DS1 seemed to have some sort of sensory issue, although never enough to have a diagnosis - he couldn't tolerate certain clothes (still hates them now), would hate to wear a hat, he had problems with certain textures of food, although there would have been mechanical aspect to that as well because he couldn't swallow properly.

Anyway, we had his first revision done when he was 6yo. It stopped the gastric problems immediately. I later realised that despite it costing ££££ and being done by a tongue tie "expert" it wasn't bloody well done properly at all. We went to see the dentist who trained with Dr Kotlow and he lasered an upper lip tie and posterior tongue tie.

It was about a year ago now, and DS1 says he is glad that we had it done because he feels he can move his tongue a lot better and it isn't sore if he moves it too much. His lip tie is gone too which was annoying him I think. Before revision, if he opened his mouth wide, I could see his tonsils in their entirety. Now, I can't see them at all, I would need a tongue depressor. That illustrates how much higher his tongue now sits at the back of his mouth.

It is a really complex subject, and is very far reaching. Ties can affect the whole body. DS1 has curvature in his neck, possibly from the tensions caused by the ties, and that of course has a knock on effect on the hips which were out of line which made one ankle roll in the way and the other out the way. Basically knocking his whole body out of alignment. Luckily, our orthodontist specialises in this type of thing and completely understands the effects of ties. He is also an osteopath and has been working on straightening ds1 out.

Sorry for the essay! It's just that I could ramble on about this all day grin I hope it's helpful!

mawbroon Mon 30-Sep-13 20:35:48

Oh, also, meant to say that upper lip ties are accompanied by posterior tongue ties around 99% of the time.

Don't let anyone tell you different!

CCinDisguise Mon 30-Sep-13 21:36:40

Crikey that sounds like you've had a tough ride! Hopefully things continue to improve for him!

My DD was checked for tongue tie many times because of the severe pain I was experiencing but I was always told there wasn't any tie. But I am wondering if there is a prosterior one as she can't stick her tongue out very far! Neither can I or my DP as I've since realised we both have some degree of tongue tie.

Reading through your DS's symptoms makes me think my DD doesn't suffer that badly. Although wind and possibly reflux meant she was an unsettled baby! She's always had a healthy weight gain, has always been happy to take breast, bottle, any texture of food, she also has a dummy at night which means she predominantly breaths through her nose! However she's only 15 mths so maybe these symptoms could still come on?
Her lip tie is pretty thick and attaches right down onto the gum so something will need to be done about it. Just makes sense to do it before 6/7 years though!

Thank you for your reply!

mawbroon Mon 30-Sep-13 22:19:05

Yes, it sounds a lot all written down, but remember that's 7 years worth in one post! At 15months, we had really only had problems with sleep, breastfeeding and allergies. The rest all came later and it's only in hindsight that I pieced it all together.

The fussy eating started about age 2yo if I remember right and I think I mentioned earlier that he was 5yo before the gastric troubles came to light.

If I knew back then what I know now, I would have no hesitation going straight to either Dr Levinkind or Dr Roberts who revised him properly! Seriously, if you possibly can, skip the NHS and go to Dr Levinkind. Dr Roberts (Cote Royd Dental practice, Huddersfield) is only doing under 1s and over 6s as far as I know.

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