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Tongue Tie, Lip Tie, Milk Blisters and other questions.

(9 Posts)
Spiritedwolf Sat 29-Sep-12 17:27:21

I don't know if anyone will remember me, I posted a few times here when I was pregnant and said I'd probably be back for practical advice. Well here goes, sorry for the length of it but I feel I should put everything down and get it off my chest (breasts wink ) so to speak.

If you don't read the rest of the post, my main questions are:
If I get referred for TT division, how can I convince them it does need doing even if it isn't the most severe kind?
Does Upper Lip Tie affect feeding and how can I convince them to divide that too? Would it be at the same time as TT?
Have any of you had TT divided at Ninewells and what was your experience?
If they won't do it, what are our options in Scotland? How much does going private cost?
Should I lance a milk blister or leave it?

The little wolf cub is now 8 weeks old. We had a (rather fast!) VB with immediate skin to skin and feeding. Shortly after he was born I noticed he had a tongue tie but also that he could stick his tongue out a little, so I figured it was minor. I mentioned it to the midwife who did his check up before we went home and she agreed he had one and that it was minor.

We've had quite a few problems with feeding, mainly that I've had sore, blistered nipples. He does feed very frequently, and for long periods of time, though I couldn't for certain say that it isn't within the normal range for a baby his age, as I took the decision early on not to fret over how often and long he was feeding, but to just keep offering on cue.

He only lost 90g by day 5 and by day 10 he was above his birth weight. He followed his centile line (just above the 50th) rather closely for the first few weigh ins, but has now drifted down to the 25th over the last few. This isn't enough to worry the HV and I know it shouldn't concern me... but it does a little, because I'd like him to start tracking a line before it gets to the point where I'm being advised to top up. Topping up concerns me, because although I know there are EBF ways of getting more milk in, he already feeds for so often and long that I can't see a way of fitting more in, let alone time with my breasts to express. He put on 4 ounces in the last week, and 10 the week before that. HV is completely unconcerned and supportive for the moment - she said to look at it as 14 over the fortnight.

I've had a lot of help with positioning and latch and feel pretty confident that I know what I'm doing but it is still uncomfortable, and results in blistered nipples, which heal I get a few more comfortable feeds in and then I get another blister. We have to use the exaggerated latch or flipple method to get him on deeply, in fact without it he struggles to latch at all (just keeps pushing into my breast till it covers his nose - don't know if that's just the way my breasts are, soft?). What made me persevere is that we have had the occasional really comfortable feed so I always figured that we could get it right I just needed more practise.

At eight weeks feeding is still something I need to concentrate on (because he does drop back onto a shallower latch if I'm not careful) and is usually a two handed affair.

So after spending the last 8 weeks dealing with this on the basis that our problems stemmed from me and him needing to learn how to nurse, and me being a bit slow about it, I'm now coming back to the tongue tie and wondering if it is affecting his feeding and that we can't really work around it - which I would have liked to have done as especially when he was little, I didn't really like the thought of anyone cutting any bit of him. But now, more sensibly realising that his immunisations do hurt him but we think its worth it and can nurse him straight after to soothe, we think that if it could help the feeding then its worth the momentry pain/discomfort.

So I picked up the courage to ask GP about it at his 8 week check, fully expecting to have to argue the case that it was affecting his feeding because it didn't look severe. Unfortunately the GP was most unhelpful, she said that they weren't done anymore because it was a stress to put them under anesthetic and that it didn't help feeding anyway. I said I was sure that young infants could have it without GA and she said no. She didn't look in his mouth. I started to get a bit emotional at this point, because I didn't felt confident arguing about it with a doctor. She saw that I was emotional and asked if had expressed (I have occasionally to relieve my breast of a couple of ounces in the night if he's only taken one side but not enough for regular feeds so far and I really want to EBF) and then said that if I was finding it that sore and difficult then maybe we should bottlefeed. Cue more emotion, as BF is really important to me and baby. I pulled myself together for the rest of the exam, and we then went in for the jabs. He cried out when the nurse did them and I put him straight on to nurse it better and he was quickly calm and we walked out to the reception area whilst nursing.

I think this cemented in my mind why I love BF so much, that I can comfort him so completely. I have been bloody minded enough to get us to 8 weeks, I'm determined to give him his 6 months of EBF and preferribly to 1 year and beyond. But I still think its senseless for me to have to go through reguarly painful nipples when it could be so easily sorted.

I spoke to my HV about his weight gain as it had only been a little in the past week and we were due to go to fortnightly weigh-ins (then to monthly) and I didn't really want to leave it so long incase he is dropping still. As I've said, she was really supportive and reminded me not to worry so much. She was surprised that the doctor hadn't known that TT could be divided without GA and said that although its rarely done, it can be and she was pretty taken aback that the doctor hadn't looked in his mouth and had suggested bottlefeeding. So she's going to dig out the proceedure for her to refer us herself.

Phew, that was a long story, sorry! But there's the context.

About the Tongue Tie. Our symptoms in terms of it interfering with feeding are my sore nipples which are usually classically 'lipstick' shaped after feeding. Although he can cover his bottom jaw with his tongue, he doesn't always so I can end up bitten. Recurrent blisters on my nipple. He spends most of his waking time feeding, and often falls asleep at the breast before he's satisfied (If I try to move him he wakes and wants on again). Noisey feeding, even though we can usually avoid clicking by getting a deep latch, he can be quite gulpy. Him struggling to maintain the deep latch.

I know its not awful, and we have managed this far. I do wonder though whether the only reason he's kept a reasonable weight gain up till now is because I am willing to nurse him so much and he might be really ineffiecient. I worry that we might not be able to keep up with the centile lines as he grows and that he might be missing out developmentally because so much of his time and energy is used up on feeding.

What I don't know is whether, given how rare even my supportive HV thinks having TTs divided is, the doctor we are referred to (probably Ninewells, Dundee) to might refuse to do it because it doesn't look severe enough (would be tempted to say that its not a cosmetic proceedure, so look isn't important, the point is that functionally it isn't working as well as it should, and he/she would be welcome to try and see how it feels... angry )

I just feel a bit of a fraud about it all really because as most feeds aren't agonisingly painful, just uncomfortable and I'm good at putting up with it (had no pain relief during labour either... though there wasn't really time!) it doesn't look like there is a problem. And he's been putting on weight reasonably well, so I keep getting told that I must be doing something right. Plus I really want to continue regardless, if it was that bad I'd be switching to FF, right?

So I don't know how to convince someone who may be unwilling that it needs done. The only thing I can think of is to keep asking what the downside of having it done if it doesn't make feeding better? Momentary discomfort for a 80-100% chance of improving things?! Especially when he had a Vit K injection even though very few babies need it.

About Lip Tie. I had wondered previously if he also had a lip tie as I could see a little bit of connecting tissue between his upper lip and upper jaw there and sometimes his lips are pursed when he latches on. But I didn't know how much was normal. Of course I came across pictures whilst researching TT, and I think his is severe enough to treat as it would be right between the tops of his front teeth if he had them.

Given how hard I might have to fight to get his tongue tie divided, what chance is there of us getting his upper lip tie divided too? Is there any evidence I can look at about the effect of upper lip tie on feeding? I've noticed it mentioned in relation to biting, which concerns me as I do want to feed him past teething. But is it likely to be affecting our feeding now? and how can I convince a doctor that its worth dividing it too?

Does anyone have experience of getting TT/LT divided in Scotland, is there somewhere I can take him to be done if Ninewells is unwilling? How much would it cost if we had to go private, as cost of the proceedure and travel could be a problem.

Blisters/Milk Blisters. Up till now the most I've tried is a hot compress before nursing and they've eventually sorted themselves out after a few days of painful nursing. Followed by a few days of tenderness while it all heals. Then shortly after I end up with another (once I had 3 at once sad )

I have one at the moment, is it better to let it burst itself or should I lance it with a sterile needle? Its uncomfortable/sore between feeds, really painful when he latches on and sore whilst feeding.

Weight gain. I've started doing breast compressions to help him out. HV suggested trying to space out his feeds more so that he is hungry and tanks up, but it seems counter intuitive. I've been offering him the breast whenever he cues or fusses. He isn't really going longer than 3 hours at his longest stretch at night at the moment though he has gone 4-5 hours in the past (from the end of one feed to the beginning of the next), and 2-3 hrs in the day. But that might happen once or twice, and he can be feeding every 1-2 hrs in the day, and often cluster feeds an afternoon and evening away. (I had him take 8 sides the other night before he eventually let me settle him in bed). Because of the length of his feeds and him catnappinig between sides, I don't think I could give you an accurate idea of how many feeds a day he takes. One day I tried to count, starting at midnight, he'd had 7 good feeds by lunchtime, and then I gave up counting because I knew he'd feed more in the afternoon and evening (cluster feeding etc) so I'm sure we're over 12 feeds a day.

Sorry for the mammoth post. Please don't kick us out! sad

It might not seem like it from this over anxious lengthly post, but in the main I'm really enjoying breastfeeding him and seeing him grow. If anything I think we've been lucky (no thrush, blocked ducts, mastitis so far) and I don't mind feeding him as often as I do at the moment even when its difficult.

Thumbwitch Sat 29-Sep-12 17:38:54

I confess to not reading your entire mammoth post but that's because I should be in bed because it's early morning here.blush

However. TT can be snipped even if it is minor - my DS had a partial posterior TT that caused problems with feeding, and the paediatrician I was referred to warned me that it may make no difference having it done as it was fairly minor - but I could still get it done if I wanted to. I said yes - do it - anything that might help. It made a HUGE difference. (UK NHS, I hasten to add).

Lip tie - DS also had this, the lip frenulum was quite thick and attached to the base of the gum so I was worried it would affect his teeth - GP said there wasn't a problem, it would probably break of its own accord and nothing was likely to be done (I think if there's a really thick cord that goes over the gum they consider it maybe). Anyway - when DS was about 3, his cousin accidentally kicked him in the mouth and that snapped the frenulum, so problem solved. It never caused a problem feeding.

I had DS checked for TT because DH has one that was never dealt with - it hasn't caused him major problems but he does chew funny! And he's not that great at kissing... Anyway, knowing that it can be hereditary I wanted DS checked and it took at least 3 HCPs to find it - missed it visually, found it manually.

TT can be left but can lead to problems with speech and problems with teeth hygiene, depending on the severity (and of course the minor issue of kissing later,...) - a friend of mine's DS had a quite severe TT that wasn't picked up until he was 3, and because he had speech issues, they had it divided then under GA - much worse for him to have it done at that age (but necessary for his speech development).

peeriebear Sat 29-Sep-12 17:45:00

I will be watching if you don't mind because you sound exactly like me but further along! DS is nearly three weeks and we have all the same problems as you apart from the milk blisters. I could have written your post- awkward latch, pursed lips, lipstick shaped nipples, constant feeding, falling asleep on the nipple and wanting to feed straight away if woken, etc etc. Today and yesterday I have done nothing but sit on the sofa and feed him for hours and hours.

mawbroon Sat 29-Sep-12 17:49:06

Don't have time to do a long post just now, will be back later.

Thumbwitch Sat 29-Sep-12 17:52:04

have a read of this thread - mawbroon started it, so it may give you some very useful information and might save her some time when she returns! grin

whenwill Sat 29-Sep-12 19:02:49

I think we should all book 10 min. appointments with our gps and sit there silently while we make them read the tt thread.

Just get it done and asap; it will make so much difference. There is always some excuse why to wait and then 'they' decide it's too late. We had it done at 7 months without GA (in london though) and it was fine.

Just do the tt first and see if it makes a diff. (lip tie may take more persuasiona nd take longer to organise). Although it is reported to make a difference, there seems to be no clinical evidence (yet) for lip tie revision and it's more traumatic I understand.

You could ring Southampton hospital or Ann Dobson and see if they can reccommend anyone in your area e.g. lactation consultant. They might be able to come to your house and you won't need to wait for referral (and they might be more experienced). If you do go with referral take someone with you and a copy of tt thread. Sit and cry and refuse to leave. Do the excercises afterwards to ensure tongue stays mobile and doesn't reform.

(Do you have NCT bf person to chat to?)

dd also has upper lip tie and hasn't bitten since tt snip. Think it was related to top two teeth coming in (they do have a gap but may straighten out later).

whenwill Sat 29-Sep-12 19:04:22

bf mums will go through a lot to stay bf mums. doesn't mean it's all ok and that you can happily cope for months to come

RedKites Sat 29-Sep-12 21:29:40

Congratulations on your DS!

This post has lots of information on lip tie . In particular, she describes how to do an exaggerated latch, combined with flicking the lip outwards - if you're already doing exaggerated latch, but not this variation on it, it might be worth a look.

mawbroon Sun 30-Sep-12 11:35:25

Aaaaargh at your GP!!! angry but sadly not surprised.

When people describe ties as 'minor' they are usually basing that on the appearance of the tongue, or how far it can be stuck out. But, the important thing about the tongue is how it functions, not how it looks.

What you describe of your feeding experience is typical of a tongue tied baby. Your are right that your problems are likely to be stemming from the tongue tie and/or lip tie.

Milk matters would be able to tell you what your options are locally.

DS1 had tongue tie that was undiagnosed until last year (he is almost 7yo) and we are dealing with the consequences of untreated tongue tie and lip tie.

After my experience of trying to convince medics about the connection between the tongue tie and his problems, we went private. Either the procedure wasn't done correctly, or it reattached, or a bit of both, and he was still restricted 6 months after, so we had it done again.

This time, we chose to travel to Huddersfield (a 480mile round trip and i know it's further than that for you from Tayside) where there is a dentist who trained with Dr Kotlow (have a read of some of his articles on tongue and lip ties).

He uses laser and local anaesthetic, and also does upper lip ties. As far as I know, he is the only person in the UK doing lips, but don't quote me on that.

I would also add that there is a really good tongue tie support group on facebook.

And, RedKite's link with the exaggerated latch and upper lip roll is the way forward for now.

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