Upper Lip Tie revision procedure - help and advice?

[ghosteditor]

DD (16 months) has a pronounced upper lip tie which attaches at her palate - from photos I've seen it looks like she has a grade IV tie. We've booked an appointment with a pediatric dental surgeon on Thursday, who diagnosed her tie from an emailed photograph. She's never had a tongue or lip tie spotted by a MW/HV/GP, but she very clearly has a pronounced tie and a large gap between her teeth.

She's still bf and I certainly never had any significant pain on feeding. She did, however, feed constantly, only one breast at a time (which took ages), fed to sleep a lot, was 'colicky' for a long time and occasionally makes a clicking noise when she feeds. She is still waking and feeding through the night despite our best efforts to solve her waking habits. All of this I've put together in hindsight, of course.

She still bfs a lot and doesn't eat much at all despite being extremely active. I've pondered whether a laser revision is necessary, but she's hardly gained any weight (maybe 1.5lbs) since December and I'd hate to find out that the ULT is responsible for her lack of interest in food.

So if anyone has any advice or support, it'd be great to hear it.

Has anyone else been through this? What should we expect at the procedure? Does anyone have any anecdotal evidence of eating improving in toddlers after the procedure is carried out? TIA.

Sorry, no advice, but I suspect my ds has a similar lip tie and was wondering how you found a suitable dental surgeon? I don't know where to start as I feel that GP/HV will be useless.

I don't know, but 3 of mine had tongue tie and I'm pretty sure there will be improvement in both BF and weight gain as both problems restrict movement and proper latch.

my DD used to make clicking noises (kind of like the disapproving tssk sound) and would just loose the "vacuum". nightmare.

she had really bad posterior TT - the surgeon put a tampon type thing sprayed with anesthetic under the tongue to numb it then got to work. (do you want more details?)

I hope this is useful - I hope someone with experience of your DD's condition will post.

Exbrighton - can you ask your dentist to recommend someone?

HV/GP should be able to help and refer you.

you could also ask the hospital you belong to / where your DS was born

Thanks everyone.

amazing yes, details welcomed, even if unpleasant. It's a laser procedure we're expecting which I understand tends to be more lasting and it cauterises the wound as it goes.

exbrighton, actually it was a group of MNers who both alerted me to the fact that DD might have an ULT (massive gap between front teeth) and recommended someone. Dr Malcolm Levinkind is a pediatric dentistry specialist. I actually just emailed him a photo then took it from there. I think you can call his offices in London. I understand there's also someone (maybe in Manchester?) further north who does laser revisions. Not everyone will do the procedure on toddlers and NHS policy, as I understand it, is to leave it unless causing problems with newborn feeding. Often older children will fall and sever the tie themselves. But it can require orthodontics if the adult teeth come through in the same path as the baby teeth, and can cause speech issues as well as feeding problems. It's really hard to get good information, but I was added to a TT/LT advice facebook group recently which is a source of good information

Thanks Ghost, that's v helpful. More than 1 person has recommended Malcolm Levinkind. I'm just unsure whether I should act on this or not - my ds doesn't have any problems at the moment. He eats well and breastfeeding is usually pain free. But I do worry about it causing dental problems later on... I guess I should contact Dr Levinkind and get an expert opinion!

Great! The initial consultation is £90 and then you can chose to do the procedure there and then, so you could go along just for the information. I've been dithering for a while but finally had enough of the lack of interest in food - she's dropped right down the percentiles for weight.

as you're hsving laser it's incomparable, but here it is.
she had a chunk at the base of the tongue which was cut through with scissors. it took a few minutes.
blood everywhere, screaming her head off - she was 3 weeks old.

fed her straight after for 5 mins.
she came off, boob covered with blood. within days she was feeding much better.

she also had an unusually arched soft palate which was corrected with cranial osteopathy.

she was born on 75th centile, dropped down to 0.4 th. took 6 weeks to get back to her birthweight.
at 4 months she was still being fed every 2 hours!

she's now 13 months, back on 75th centile. standing firmly on chunky thighs. you wouldn't know what we went through!

ghosteditor

you need to get it done, so have the consultation and get on with it the same day.
I'm sure they will allow you to have a few minutes to discuss what you want, but if you think you'll do it, don't delay it.

Thanks mumof6, what a story, well done you and your DD! Sounds like a severe case.

It's a 120 mile round trip for us so unless he says it's totally unnecessary, we will be going ahead!

He may well find a posterior tongue tie too. It's pretty rare to have a lip tie without also having a tongue tie.

Just be prepared in case that is what happens.

ds1 had lip and tongue ties lasered last year, but he was almost 7yo so a whole different experience. We did a 450 mile round trip to Huddersfield. A good frenectomy is worth travelling for.

Thanks mawbroon. Huddersfield? No way! I was there last week as that's where my parents are. Wish I'd known!

Oh, that's a shame, you could have killed two birds with one stone.

BTW, are you familiar with Dr Kotlow's work?

He is the leading expert on tongue and lip ties, and both Malcolm Levenkind and John Roberts in Huddersfield were both trained by him.

Actually, now I come to think about it, the last I heard, John Roberts was only doing under 1s and over 6s. So, it doesn't matter that you didn't know about it!

Ah, yes, I think I remember hearing that too. Thank you. I'll take a look at the link

Well, procedure all done and she's doing fine. Dr said it was a very deep, very fibrous grade IV tie. We'll see what effect the revision has!

Glad it went well! Hope the recovery is quick.

Good to hear it went well.

glad it went well. How's things today?

She's doing well thanks. Not so keen on the stretching exercises but no apparent pain. And her latch has already improved with her top lip. Hurray!

Did he look at her tongue?

DS1 hated the stretches so much. He did them himself so he could have control over the pain.

Can't be nice having to do it to a young dc who doesn't understand what's going on.

Yes mawbroon, she has a very mild posterior tie, which after discussion we decided to leave. It's milder than my own TT which has never been an issue and she seems to have no restrictions with her tongue.

That's good news about the tongue. Often people say "mild tongue tie" when they don't really understand about posterior ties, but I know that won't be the case with Malcolm Levinkind!

Both my DSs are tied, but ds1 had loads of problems and ds2 has none. Both ends of the spectrum! Always best that each case is looked at individually.