nightmare: follow up on feeding problems (long, sorry)

[jennyapples]

Hello all,
I asked a couple weeks ago for some help about the absolute agony of feeding my little boy. The overwhelming suggestion was that it was a tongue tie and I received some excellent links for people to contact. My health visitor agreed (over the phone) that it sounded like a tongue tie and the midwife at the breastfeeding clinic at the hospital agreed that it was a tongue tie.

My health visitor gave me a referral and I went to the 'rapid access tongue tie clinic' at St. George's hospital in Tooting, London, with high hopes.

The doctor (Jamil something?) was arrogant from the outset and wanted to take the baby into the other room to examine and perform the procedure if needed. Umm...no. I'm not squeamish but my discomfort is much less important than being there if my baby does need me. He looked at me like I was completely mental for coming into the room.

He and the nurse examined the baby and said that there was absolutely no tongue tie, nothing there, complete tongue movement. They handed him to me and went on with their business, acting like I wasn't there. He said "it's a good thing that there's no tie" and I was clearly upset, because this put us right back at square one. He looked at me like some lunatic with Munchausen's by proxy or something, like I WANTED to have my baby's tongue cut. It was so distressing.

So then two days later, this Wednesday, I went to my local breastfeeding clinic at the hospital. The very experienced midwife there took one look and said that it was obvious he has a posterior tongue tie, his tongue doesn't move properly, he can't stay on the breast for more than a few minutes. I just started crying because I'm exhausted by the whole thing.

So now I don't know what to do. I can't handle going to another specialist only for them to tell me I'm crazy and there's no tie. I'm going to try cranial osteopathy because, well, why not. The midwife said that we should find other positions that minimize the jaw contact and I did have some luck in the session, though I've struggled to replicate that.

I've tried to contact Ann Dobson IBCLC repeatedly but no answer, so I would recommend not bothering with her. If she's on holidays she needs an out of office message on her phone and email. The midwife gave me a couple other names to try and I'll contact them.

I have no idea what to do next. HCPs either don't answer me or tell me I'm nuts. The LLL website won't let me sign in for some reason so I can't seek help there. And EVERYONE I know keeps telling me "oh yes it hurts at first, hang in there" like I'm not bloody trying hard enough. This is not regular pain. Next person who tells me that, I will go berserk at. Next person who tells me to just use some lanolin and get on with it, same thing. I'm just despairing...everyone I know is suddenly reproducing and they all keep complaining about difficulty breastfeeding in public. I'd LOVE to be able to. They keep complaining about how boring it is to sit and feed for hours at a time. I want nothing more than to do that. I have no idea what to do. :(

Oh darling. Are you near London? Malcolm levinkind.

I am, actually I'm in central London, where it looks like he might practice (from his website).

I'm terrified to go to another specialist and have yet another person tell me that there's nothing wrong with him. Does Dr. Levinkind specialise in tongue tie?

Hi, I am in SW London so presumably quite close to you if you are near St G?

I saw Geraldine Miskin (LC), she doesn't do the snip but did diagnose TT and seemed v much to know her onions, I would really recommend her if you want a firm diagnosis re TT and advice on other solutions if it isn't TT.

I then saw Graham I Smith at Kingston Hospital (£80 for a private appt, available within a couple of days of me phoning) for the actual snip. He doesn't actually need a referral to see you as he'll form his own view on whether there is a TT - so if you feel pretty sure it IS a TT, and you have the funds, you could just go straight there. He does NHS appointments too I believe.

I have also seen lots of Levenkind recommendations but he's in N London so a bit trickier if you're SW.

I know it's dispiriting to see yet another professional after your shitty experience at St G but you may have just run up against someone crap. The surgeon I have heard recommended at St G is called Catherine Milroy so I don't know who your Jamil person is but it may not be his specialism...

ah cross post. Yes Levenkind absolutely specialises in tongue tie (and lip tie).

Malcolm levinkind trained with larry kotlow - the go to guy for snipping ties. He is absolutely a specialist, and will revise a tongue and ult by laser. Pricey, but worth it to get it right.

minipie - thank you for your detailed reply. I'm actually in central (W2) but St G was only a 30-odd minute drive and was rapid-access so I thought I'd have a solution on the spot. The clinic is 'run' by Catherine Milroy and that's who I was told I'd see. I got this other guy who was no joy. He also told us that 4/10 patients he sees do not have tongue tie. My husband (who was there with us) is convinced that this guy is just bothering to diagnose and snip the very obvious ones.

The other thing really worrying me is that my midwife made some passing comment about how cutting a posterior tongue tie can cause speech difficulties. Now, I haven't seen that come up anywhere else (the opposite, in fact) but you know how as a mother any small thing like that makes you question if you should do it? It's made me scared to pursue it, in addition to not being able to handle yet another person telling me "it's just supposed to hurt."

I've just contacted two lactation consultants, including Juliet Albert, though I'm a bit afraid there as well, as her 'testimonials' section has a comment about how helpful it was that she told them that breastfeeding does just hurt.

I sound like such a wimp...you'd never know that I'm a total ballbusting tornado of force. I'm just drained. :(

Sunnyintervals - I can't seem to find info on the LLL group in c. London. Do you have a link? Thanks!

I know an independent midwife who is trained to cut tongue ties and she is very helpful and sympathetic. This is her website:
www.independentmidwives-southeast.co.uk/

It's a private service, costs £120 if you are wthin 10 miles of Bexleyheath, plus travel if you're further away.

Hope you can get this sorted!

I highly recommend Joanna Knapp. She trained with Mervyn Griffith in Southampton, is very knowledgeable and also incredibly caring in her approach. She works out of a private bf drop in in Queens Park (every Tues - pm me for details) and also at the Maris Practice in Twickenham.

I have every sympathy for your frustration, but don't give up. The right person will sort out your LO's tie and then you'll likely see a rapid improvement. There is hope!

Another recommendation for Dr Levinkind. He lasers ties (lip and tongue) in his North London practice.

If I had ds1's baby days again, that's where I would be heading, without a shadow of doubt.

Oh, and bollocks to your midwife saying cutting posterior ties can cause speech problems.

HOW can restoring full movement in the tongue cause speech problems???

I have nothing useful to add but god I feel your pain. This exact thing happened to me, a lactation consultant looked and said posterior tongue tie and lip tie, and the fancy doctor I saw to revise it gave a cursory look, said she has no tie and when I asked him to watch a feed he sent in a nurse to give me advice on how to breastfeed. We are soldiering on with nipple shields. I hope you have some luck with another doctor, but it is so so demoralising getting shoved from pillar to post and being made to feel like a bad mother as a bonus.

I have never heard that revising a PTT can cause speech issues, in fact the opposite as you say. Unfortunately TT is an area where lots of health professionals think they know what they are talking about, but relatively few actually do.

i am not in any way qualified but here is what i know about PTT. Looking back at your original post, the main thing you mention is the clamping. The reason that PTT causes clamping is because the baby can't latch securely and so keeps losing suction and so they clamp on. The loss of suction also causes a 'clicking' type sound that many PTT babies make when feeding. it also means the baby swallows lots more air, which in turn causes farts and/or lots of posseting (often mistaken for reflux). Nipples can end up flattened or deformed, white at the tips after feeds and/or cracked, due to the clamping and constant on and off. The baby has a shallow latch, slips off the nipple and has to be relatched often, and often gives up feeding after only a short time and/or gets very tired and unhappy towards the end of feeds. Also Ptt often goes with an upper lip tie, so the upper lip may not flange outwards properly. Does any of this sound familiar?

Thanks all for the links :)

Minipie:
-So, the pain and clampng are the biggest issues. He makes a sort of clicking/squelching noise on each suck. Multiple LCs/MWs/etc have said his latch is good & he has enough boob, so it's not that he's just nipple-eating. He burps a lot and is a bit of an epic farter. He's not colicky at all and sleeps well. The fronts of my nipples have white circles on them after a feed. When we do feed him from the bottle, there is milk pouring out of his mouth absolutely everywhere, and he makes horrendous gasping noises. He doesn't spill when BF but he does gasp quite a bit, and whether bottle or breast, there is always a gap at the sides of his mouth, where he isn't forming a full seal.

The biggest thing I think is that he will rarely stay on the breast for more than a couple minutes at a time, and even if he starts out latched in a good position (in spite of my pain), he shortly is falling off the boob. He gets irritable and starts swatting the boob away quite quickly, so I keep re-latching him, but each time is extremely painful and he only lasts a couple minutes.

After the BF clinic I was at on Wednesday we did manage 2 or 3 reasonable successful feeds of a good 10-15 minutes each, where it wasn't really painful and he stayed on, but I haven't been able to replicate that since then.

What do you think? I'm totally open to it not being a TT, but having such conflicting feedback from HCP is driving me crazy. I desperately want to BF. Know what I mean? :(

One more thing:

After some mentions in this thread, I looked up upper lip tie and holy crap. I pulled up his upper lip and it looks exactly like a google image search of it. There's a full membrane attached between his lip and upper gums. Does that cause the problems, or the tongue, or both?!

Thank you all so much for your continued support.

Sorry, one more! Is this an upper lip tie by any chance?!

img.photobucket.com/albums/v88/catalina_101/2013-08-10191307_zpsacba17c1.jpg

Can't offer you as much advice as everyone else as I have no experience of tongue tie.

I just wanted to say don't feel like the doctors will judge you if you go to them again...it sounds like you had a really bad experience the first time around in an overly busy clinic with a cocky doctor tbh.

I'm wondering if the doctor you saw initially was maybe the consultants registrar not the actual consultant if so he might not be able to spot the less obvious tongue ties like a consultant would.

Whoever you see next time make sure you are seeing the person you requested not their junior registrar insist on it as you book in even if it means waiting longer.

(totally unrelated subject but I'm pregnant and when I met my consultant for the first time he insisted on caesarian after reading my history. At my next appointment I saw his registrar when I mentioned getting a date for caesarian he told me my history was no indication for caesarian, he read my history as he was talking to me. He told me that natural birth was for m . I too felt like he thought I' was being weird for being a bit disappointed. The next appointment I insisted on seeing the consultant even if it meant waiting longer and when I saw him he asked why I'd decided to have vb against his advice I explained what had happened and I'm now having a elcs. If I'd gone along with the registrars opinion I'd be having a very high risk natural birth. Doctors don't always know best)

Sorry meant to add hope you get sorted out quickly :)

we saw malcolm levinkind who did both lip and tongue tie in one sitting. He also assessed it for us as well. Even though DSs TT reattached, his LT didn't and I would still recommend him. I think we just got to him too late.

and yes, that looks like a lip tie.

Yes, that's a lip tie.

everything you a describing sounds just like feeding my dd, prior to having her PTT cut. (except she didn't sleep!)

your picture looks a lot like my DD's upper lip - which we were told is a tie but not serious enough to need cutting (it is apparently very very rare to cut upper lip ties in the uk, it's usually only done at a much later age if it causes dental or speech issues - Levenkind is almost the only person in london who'll regularly do it I believe, though Graham I Smith who we saw will occasionally if he thinks it's justified). A really serious upper lip tie will generally cause a gap between front teeth - do you or your DH have this? (as it tends to run in families).

however, even if the lip tie isn't serious enough to need revision, the thing is that lip ties sooo often go hand in hand with PTT. I was convinced that the lip tie was the problem and snipping the PTT on its own wouldn't solve our issues, but in fact it really did.

good luck

Thank you everyone for your info.

Minipie - so you raise another interesting point. I was talking to my mum and she said that she did not manage to breastfeed me for very long. She tends to wipe her memory of anything she doesn't need, so she couldn't remember why, until I asked if it happened to be Blinding Agony? She suddenly remembered and said that yes that was the reason. Then I remembered waaaay back to when I got my tongue pierced 10 years ago and how it was incredibly difficult for the piercer to do because my tongue couldn't go out very far. I mentioned this to the midwife at the LC clinic on Wednesday and she made me stick out my tongue as far as it could go and had a quick look in MY mouth. She nearly fell over laughing and said she's pretty sure I have/had some sort of tongue tie! Last night when I realised this thing about baby and HIS lip tie, it suddenly dawned on me that I naturally have a massive gap in my front teeth. I had braces twice, for a total of 3 years as a kid, and those never worked so I have a permanent retainer holding them together. That makes me wonder if I had some sort of lip tie that isn't quite so big in my adult mouth.

Weird, right? It does seem like it's hereditary....

You guys are making me feel so much more confident to try a HCP again. I'm going to contact Dr. Malcolm Levinkind and try to get in for an assessment. I honestly don't know how I'd be getting through this without the support from this community. A heartfelt thanks.