upper lip tie, posterior tongue tie, feeding is excruciating - what to do?!

(25 Posts)
Kveta Mon 29-Jul-13 19:01:54

DD is 13 months, and feeding is just getting more and more painful as time goes on. She has he 4 top incisors now, and is grazing me in every feed - her lip has never curled back as it should, but pre-teeth it didn't injure me!

I also now have a bleb on one side, which won't go, and am crying sometimes through feeds on that side.

DH isn't keen to pay for her to have it snipped, but has yet to dare suggesting I wean her. I've been reading 'breastfeeding answers made simple' and 'the womanly art of breastfeeding' but neither have solved the bleb issue. (Have tried bursting it several times, expressing from behind it, using wet heat on it - not tried lecithin supplements yet, but am considering it).

I don't want to wean her yet BTW, so please don't suggest it - she still derives a lot of comfort from feeding, and it's all that gets us through some nights!

Does anyone have any experience of nursing a toothed child with ULT and PTT, and thus any advice for me? Thanks smile

Kveta Mon 29-Jul-13 21:12:44

bumping in case anyone has any advice? DH has said I should investigate getting either the PTT or ULT cut, we can decide depending on cost, so going to see HV (ours is a lactation consultant in training!) on wednesday for help.

ghosteditor Mon 29-Jul-13 21:17:35

DD (18 mo) had both ULT (grade IV) and PTT (mild) which was picked up by me at 12 months. She had no issues bfing but hardly ate any food at all until we had the ULT laser revised at 16months. The change in her eating was remarkable, and she put on 1lb in 3 weeks having not put that much on in over 4 months!

Her bf style hasn't changed much, but I could have encouraged more of a lip curl post procedure if we had needed it.

We paid privately to see Dr Levinkind for laser revision which has a lower recurrence and infection rate than snipping. He was very good, and it wasn't too traumatic for her. It was in the region of £360 I think, inc £90 for the initial consultation.

mawbroon Mon 29-Jul-13 21:24:33

Yes, go and see Dr Levinkind if you can.

DS1 had ULT and PTT which went undiagnosed until he was 6yo. It didn't cause too many feeding problems as he got older, but he had a whole lot of other stuff going on as the result of his ties and high palate.

We got him revised aged 6yo but if I had known about it when he was younger, I would have had it dealt with as soon as I could.

There is a section in this about the consequences of untreated tongue tie which still remain whether you wean now or not.

Kveta Mon 29-Jul-13 21:33:35

Thank you both so much! We have had no issues with her eating - she will eat anything she can reach, and is quite a normal shaped and sized child. Also we haven't had many feeding issues so far (except a lot of blocked ducts when she was wee), so my LLL friends and my HV, and dentist, have all said just to leave it for now, as it isn't causing problems. But I feel that now it really is causing problems, so I can't ignore it any more! I managed to nurse her elder brother until he was 3, so kind of want to keep feeding her a bit longer, at lest until she seems less keen on it!

mawbroon Mon 29-Jul-13 21:42:40

Yes, it is causing problems!! You being in pain is a problem!!

DS1 fed ok after the initial marathon of the first 6 months, but like you, I got a lot of blocked ducts. He took to solids really well (no wonder, he was starving!!) and his growth etc was fine.

But he had other stuff going on like gastric problems, congestion and hearing loss, appalling sleep with spells of sleep anpnoea, allergies and intolerances, mouth breathing and dental problems from his high palate, all common in tied kids.

People focus on speech and feeding, but there is so much more to tongue tie than that! I would suggest that unless your HV has taken a specialist interest in tongue tie then she may not be fully aware of all the issues.

I don't think there are many in the UK that will do an ULT btw, but Dr Levinkind will if he thinks it necessary.

ghosteditor Mon 29-Jul-13 21:43:53

Interestingly, I have a very mild posterior tongue tie but after reading the link I actually have a lot of symptoms - migraine, bruxism, issues with the tongue, anterior open bite (for which I'm having surgery), uneven teeth.
Wish I'd had DD's TT dealt with at the same time... I wonder if I can ask for my TT to be snipped during my surgery?

mawbroon Mon 29-Jul-13 21:49:21

ghosteditor - TBH I wouldn't let any old surgeon snip my tongue tie (if I had one!), I would prefer to go to somebody who has a specialist knowledge.

Did you only have your DD's ULT done? I'm not quite sure from what you wrote or have you more than one dd with TT?

Does Dr L do adults? I know he is a paed dentist, but maybe he would do a parent? If not, there's also John Roberts in Huddersfield who would revise if there was a dental reason for it, which by the sounds of it, there is.

ghosteditor Mon 29-Jul-13 21:57:42

We hadn't spotted the TT but were aware of the ULT (we just have one DD). It took a lot to persuade DH to go for the procedure so when Dr L mentioned the TT as well we dithered and decided to leave it so she wouldn't suffer with two sites of pain (bearing in mind that she was hardly eating anything and I didn't want to disrupt too much in one go). And I thought, well, it's no worse than my TT and I don't have any problems (I now know better), so we left it.

Good point about the expertise of the surgeon; maybe I could mention it at least to see what they say. My surgeon is a specialist oral surgeon so may know something about it.

ghosteditor Mon 29-Jul-13 21:58:58

Ooh, also, I grew up near Huddersfield and my folks are still there, so if John Roberts is NHS that could be good; all my savings have been taken up with my jaw surgery, for now.

mawbroon Mon 29-Jul-13 22:05:42

I have no idea if John Roberts would do a tt on nhs, but you could always phone them and see what they say

website here

Yes, not surprised to find that Dr L found a PTT as well in your dd. Pretty much everyone with an ULT has a TT as well, usually posterior. Sure, there will be somebody out there who has ULT without TT but it's unusual apparently.

Kveta Mon 29-Jul-13 22:12:30

DH and I have just been comparing tongues and we both have quite obvious PTT, and actually his is quite possibly a proper TT. And both have ULTs too. God know how DS escaped either TT or ULt of any kind! He just has an under bite and wonky jawline to deal with...

mawbroon Mon 29-Jul-13 22:28:34

Are you sure your ds doesn't have them?

DS1's bottom jaw was beginning to lengthen from mouth breathing and he is currently having orthodontic treatment to sort it out (he's 7yo so we caught it in plenty time). He wears headgear at night to bring out the middle section of his face which is very flat (not that you'd notice) and is having his palate expanded.

His dental problems are because of his high palate, but often, high palates are caused by the incorrect swallowing action of a restricted tongue which seems to be the case for him.

How old is your ds now?

Also, you might find this interesting.

Kveta Mon 29-Jul-13 22:35:23

Pretty sure - he certainly doesn't have any visible ties that we can see, and we see inside his mouth a lot! He is nearly 4. I had orthodontic treatment as a child due to my under bite, so not surprised he has one too. Feeding him was never a problem, which is probably how we lasted 3 years! His issue has always been ear infections though, and now DD seems to be going down that route too.

Thanks for the link, will read it during inevitable night feeds...

ghosteditor Tue 30-Jul-13 09:45:09

sorry to hog the discussion on this but I just found the following link which has a video of an adult who has had the TT procedure.

I actually cried with empathy - that's me all over! I've been treated for migraine, jaw pain, bruxism, and have back and neck pain as well as hip and knee issues which I spent £££ treating until the physio said he couldn't do any more until I sorted out my jaw.

If this really is the cause of my problems it would be a miracle fix. I'm actually just astounded that I've never come across this or thought about it before. I'd love to get access to clinical studies so I can read more and talk to my orthodontist about it.

Amazing.

Kveta Tue 30-Jul-13 11:56:17

that link is fascinating ghost

I just made DS open his mouth wide, and he does have a small posterior TT - but it doesn't seem to restrict his tongue movement at all, and no visible ULT.

ghosteditor Tue 30-Jul-13 13:39:36

so what are your plans for your DD kveta, and how has your DH responded?

mawbroon Tue 30-Jul-13 16:18:54

I've seen that link before ghost, I am not tongue tied, but I really felt for the lady in it.

Kveta, DS1's tongue movement looked normal before I knew what I was looking for. It was the back of his tongue that was tied down and not rising properly when he swallowed causing his tongue to thrust forward causing an open bite amongst other dental problems.

Before he was revised, I could see the whole of his tonsils when he opened his mouth. Since revision, the back of his tongue sits much higher up and I would now have to use a tongue depressor to see his tonsils. Also, he has the "Eiffel Tower" presentation of tie where the "legs" of the tower shape extend to the lower gums. This was pulling his bottom teeth inwards with the tension and they have now straightened themselves since revision

Kveta Tue 30-Jul-13 21:02:28

thanks both.

I spoke to my LLL leader today, and she has recommended I seek further help, so off to see the HV tomorrow (bfing specialist one).

LLL leader did suggest the discomfort may be hormonal in part, as periods have kind of restarted, so it may be less painful in a few days. But we agreed that this was prob only part of it.

I think my plan now is to see what HV says, and then consider referral to the dentist you both recommended.

funnily, DD bashed her top tooth today and from the blood everywhere, my first thought was 'ooh, she's smashed the lip tie!!', but apparently not! (will try and stick a photo of it on my profile, poor baby really hurt her mouth!)

Flatasawitchestit Tue 30-Jul-13 23:55:18

Hi

My daughter has a ULT, and had a PTT which was snipped at 12 weeks old. I looked into having the ult lasered by Dr L but couldn't afford it. I spent some hellish weeks with her and colicky symptoms, not helped by a fast letdown and foremilk / hindmilk imbalance.

Her upper lip tie is quite big and she fell and hurt her mouth last week, bled lots and I hoped it went, but it didnt. I'm still tempted to do something about it, I'm back working now so could afford to. I just don't know if its worth it. No one here (not even LC) seems to know much, or be fussed by it.

ghosteditor Wed 31-Jul-13 07:11:32

The lack of knowledge and available information is astounding isn't it? hmm

I would consider the ULT revision if only from a tooth health angle - tooth decay much more common with LT. Does she have a big gap? My DD's teeth have moved closer since the procedure.

Kveta Wed 31-Jul-13 08:43:51

I was quite shocked by the Breastfeeding Answers Made Simple book only having 1 paragraph on the subject of ULT!

couldn't upload my pic on MN, but have put it here if anyone is interested!

mawbroon Wed 31-Jul-13 11:27:48

Crikey, that's quite a frenulum Kveta.

Do you feed at night? I know it's a pain in the arse, but I would suggest that if you do feed at night that you wipe her teeth afterwards to help prevent decay. It looks like there are quite deep pockets formed by the frenulum which might trap milk. Even breastmilk will cause decay if it's in contact with the teeth for prolonged periods.

ghosteditor Wed 31-Jul-13 14:12:00

Wow that's even thicker than my daughter's was! Certainly a grade IV, definitely worth paying attention to her teeth. DD is still funny about having her front teeth booked, over two months on from the procedure.

Kveta Thu 01-Aug-13 14:10:40

thanks both - have decided to see dentist tomorrow then self refer to Dr. L if the dentist is no use!

I'll be interested to see if it has had any impact on her speech too - she is babbling already, but only really saying 'bbbbb' and 'bubble', with the odd 'dada' or 'mama' - no other word sounds yet. Not sure if that's her age or her mouth though!!

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