Why don't the breastfeeding 'experts' know things I can find using Google?

[ardenbird]

Argh, I find it so frustrating! I've got a DD who appears to have Dr Kotlow's type III upper maxillary tie, and I'd like this looked at and have her checked for the oft-connected posterior tongue tie. Yet I can't find anyone who even seems to know anything about either lip-tie or posterior tongue-tie.

Why is this? Just a bit of Googling found me these pages:

Dr Kotlow's patient leaflets and academic papers about lip- and tongue-tie (including posterior tongue-tie, and instructions for how to check for it, which is not just peering into the mouth)

Dr Palmer's information about breastfeeding and tight frenums, including lip-tie, among many other things

A lactation consultant in the US's page about tongue-tie, including posterior tongue-tie

Plus many, many message board threads from similarly discouraged/frustrated people like myself.

And yet, everyone I talk to around where I am has never heard of posterior tongue-tie and think her upper lip looks just like every baby's. Today I had a breastfeeding councillor suggest maybe I had thrush, to explain why my nipples are hurting.

Sorry for the rant. I just find it so maddening. We're 5.5 weeks in, and every feed feels like a battle - constant latch slipping and relatching DD, giving up and letting her eat if it doesn't hurt too much, DD crying and mad when I take her off from a bad latch from which she was eating, etc.

Yes, that must be so maddening.....

I think it's the case that most UK HCPs are not up to speed with oral stuff like this - you'll have seen that Kotlow is American, as is (the late) Brian Palmer.

Breastfeeding counsellors are not trained in the finer details of this, though most will have heard of ties and would think of referring for a check if none of the other explanations 'fitted'.

Google really is your friend in these circumstances, 'cos you can find experts that way. Have you tried www.lcgb.org/ and the find a tongue tie divider tab?

Thanks for the sympathies, tiktok. I found that site, but there is no one even remotely near me. I also looked the Unicef baby friendly site, with more luck - there were several tongue-tie dividers within a couple hours of me. I tried phoning the closest one on the list, and got a very brusk 'get referred by your GP'. I've now got a GP appointment a week from tomorrow (soonest possible), and she said a referral could take 'weeks'. So I'm wondering about going private, as I'm not sure I want to wait that long. I googled some more of the people nearby and found one who also has a private number. I'm thinking of phoning tomorrow... any hints of a polite way to ask 'Do you know what posterior tongue-tie is, or should I not waste my money?' :)

I think you should ask direct. all 3 of mine had a posterior tie. ds1 was divided ay the royal free. we took the dts to Bedford, only for the doctor to say he didn't believe in posterior ties and that some babies just can't bf. got them divided privately. so definitely worth saying "i think my baby has a posterior tie. do you deal with them?" to make sure you don't make a wasted journey to a non believer. good luck.

I know where you're coming from. To add to a similar experience to yours, once my ds's tongue tie had been identified, the 'tongue tie expert' we paid over £100 to sort it out, actually snipped a bit of ds's tongue off and we didn't manage to work out that his tongue tie had not been corrected until a few days later. The woman never returned my calls.

Posterior TT is notoriously difficult to spot- if you're not happy with what one person tells you then don't be worried about getting a second or third opinion.

If you are sure that the problem is posterior tongue tie because you are a "believer" then definitely try to get it sorted out ASAP and go private if you can possibly afford it. Your DD is 5 weeks old already and the more she gets used to sucking whichever way she is now the less likely it is that she'll change her ways after the snip.

And just to answer your question, not every bf counsellor or HCP believes that tt has a significant impact on a baby's ability to breastfeed and therefore they may not have researched the subject as well as you expect them to. You may find it "maddening" but the evidence is not as clear cut as you think and often bf issues like yours can be resolved by improving the latch without the need for surgery.
I hope that things improve for you whatever you decide to do

From what I know, the evidence that division improves feeding outcomes, with posterior tt, is quite thin on the ground. Whether this is because posterior tt doesn't cause problems, or because we haven't got the hang of doing the division, is another question.

I know LCs in the US operate on lip ties, but nobody (afaik) does that here. (If it persists, it can need to be sorted by a dentist, later, for orthodontic reasons.)

People's level of knowledge about breastfeeding varies a lot.

My DD had a posterior tongue tie which was eventually snipped at 4.5 weeks but feeding is still causing me pain.

Having looked at your links ardenbird I think DD has Dr Kotlow's IV infant upper maxillary lip-tie but when the doctor did her tt he said lip-ties don't cause problems when I asked if he thought she had one.

Has anyone actually had a lip-tie snipped? Reading the articles I really do think this could be what is causing my pain and so far none of the breastfeeding support workers can find a reason for it.

Hi, this is ardenbird's husband. It has been maddening here. Everyone we've seen so far has dismissed the problem, but then they've said things that indicate they don't understand the issue (like they've looked quickly in DDs mouth and said it looks fine when we read that you have to feel to diagnose posterior tie). If someone in whom we had confidence said it was not a problem I'd be happy with that, but so far we haven't had that confidence.

ardenbird appears to have ptt herself. Her mother had difficulty breastfeeding and gave up after a couple of weeks. ardenbird had the speech and orthodontic problems associated with it. If we can fix our DD with a small surgery and have her not undergo the medieval torture device of orthodontics which ardenbird had as a teenager, then I will be all for it. I wouldn't wish that on an enemy, much less my daughter. Since there is a maternal connection with the problem we are particularly concerned.

We've tried lots of other BF issues and fixes, which have not worked very well. DD is eating, but it is a struggle and causes a great deal of pain. The descriptions sound like the problems shes having so we want to pursue it.

Best wishes to whoopwhoopbib and others who have problems, and thanks to everyone with information.

ardenbird we had dd's tt divided privately and if you'd like to pm me I'd certainly let you know who.

ardenbird/dabug does your local hospital have an Infant Feeding Coordinator as that was the only person who looked at DD properly and watched how she fed and also looked at my nipples before and after the feed. It might be worthwhile having a search on your hospitals website as they should be able to refer you as we were.

olympia and notquite, do you know of some papers/references about posterior TT? All I've found so far was stuff about TT in general, although that looked pretty clear that it made a big difference (e.g., one study couldn't be extended beyond 2 weeks because everyone in the control group opted for the snip when offered at that point), but nothing particularly addressed posterior ties. Although I admit my research is spotty, as I spend most of my day trying to latch DD on! I'm open tp it not being a problem (and stories like mrtumble's make me hope we don't have any need for surgery!), but we haven't yet found anyone who's even heard of it in order to not believe it's a problem! If we could find someone who could give us more info/discuss the issue, I'd feel much better.

whoopwhoop, when your DD eats, is her upper lip curled in rather than flanged out? Our DD was doing this. I've started flipping my finger under her upper lip to flange it out, which seems to help her suction, although it never gets as rolled out as the bottom lip. It also leaves her with a little red spot above her lip when she's done, which I don't know if it's supposed to be normal. I've also had trouble with the nipple getting caught in that space between the lip and the mouth when she goes on, which is something I've never heard of. Everything suggests the nipple will just roll/be sucked in or something. So I'm wondering if that's symptomatic or just poor technique (if anyone thinks it's the latter, might you have suggestions of how to make sure the nipple gets in?).

And unfortunately, it's the hospital's Infant Feeding Coordinator I don't trust - she's espoused some myths and said some things that are simply not true, so I'm not reassured when she says everything is fine.

Arden just seen this thread - no experience of tongue tie but just wanted to say I think you're doing brilliantly. I know what it's like to feed when in agony (hope you're taking ibuprofen and parecetemol!) so every feed you do is amazing . It's also great that your DH is being so supportive and helpful. I remember how stressful it was for us when we had BFing agony with DS a couple of years ago.

If I were you, I'd go down the private route as soon as possible if it's affordable/feasible. I found my GP quite rubbish with BFing issues (not to say that all GPs are rubbish!) and the possibility of waiting weeks is just not on. TBH waiting over a week just to see your GP when it's an issue around feeding a tiny baby is not on. Good luck - hope things get sorted soon.

Thanks flip! I called the one private TT divider nearby on the list, and he retired the day before DD was born! Through our HV I've also now got an orthodontist appt the day after my GP appt (upcoming Fri, now), who is the local NHS tongue-tie divider. No idea if he knows about posterior TT, or lip-tie, but I do have hopes that as an orthodontist he will at least be sympathetic to my concerns about future orthodontic difficulties, and understand better - the hospital's infant feeding coordinator seemed to think a palate spreader was the same as braces (it's not, it's waaaay worse) and that 'everybody had that'.

I'm also exploring the private route - I found an IBCLC willing to consult over the phone, and she suggested a cranial osteopath, in addition to exploring TT, as DD had gone down then back up the birth canal, so might have some cranial issues that is making opening her mouth uncomfortable. It does seem to be the case that she doesn't like opening her mouth wide. We're off on a several hour drive Monday for that. We've also looked into the people anaiasmum recommended (thanks!), who are a good distance away but we have friends living halfway so could conceivable make a two-day trip of it. I'm still waiting to hear.

And yes, it is super-wonderful to have a supportive DH! I was just telling him last night that there is no way I could still be breastfeeding if he wasn't around to help me. He makes most of my meals, takes care of the cats, and even phoned my friends when I was in tears last night and made me talk to them :)

Watching this with interest as my DD has exactly the same problem with her upper lip not flanging upwards and has always had a small gape, feeding with pursed lips. Problems with slow weight gain too :-(

HV was very dismissive and said "If she can stick her tongue out, she's not tongue tied." Infant Feeding Coordinator had a quick look in her mouth and said "I don't think I can see anything".

Have you seen this link? milkmatters.org.uk/international-service-tongue-tie-talk/

arden your DH sounds like a diamond! And saw on the postnatal thread that the osteopathy is already making a difference . I shall keep my fingers crossed that the GP & orthodontist combo works out. How awful that the infant feeding coordinator thought that the palate spreader was same as braces . I had head gear and train tracks as a kid and they are nothing like the agony you had with the palate spreader!

Yes, flip, he is :)

The osteopathy has helped a lot. She now actually opens her mouth and leaves it open - so the closing was because it was physically uncomfortable to have it open, not because my milk was bitter from the iron, like the Feeding Coordinator said! Now if she gets all squirmy, I sit her up and let her rest her jaw, and she gapes again after a few minutes.

I did an internet consult with TT experts, and we've just made the decision to make the trip for an in-person consult, and division if necessary, this weekend. Saw the GP today, and she didn't have much to add other than I don't look to have thrush. We're still seeing the orthodontist tomorrow as a sort of "second opinion" although I don't expect much.

Info on the lip: TT experts thought DD's lip-tie looked thin, and thus less likely to be a problem. She said babies can curl the upper lip in an effort to create suction, compensating for a poor latch due to tongue issues, so they always fix the tongue issues first. There is (at least) one person in the UK, I think with the NHS, who divides lip ties, but only if it's proven it is making a breastfeeding issue, as the dental evidence is not clear and there are potential problems with it divided (this is the sort of thing I had been looking for, someone who could address positives/negatives and talk about studies...).

I'm still terribly nervous about the whole thing, and worried whether I'm doing the right thing for DD or not, but I think I am. The fissures/cracks in my nipples are opening up again, coinciding with DD sucking more, and I can't see things getting better on their own.