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Infant feeding

Get advice and support with infant feeding from other users here.

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Original poster

Tongue-tie - your experiences please?

60 replies

fleacircus · 09/03/2008 14:56

After nearly ten weeks of constant pain and misery, I discovered on Friday that DD is tongue-tied. I've begun reading up on it and the BF counsellor is making a referral for the procedure to resolve this, but I'd really like to hear from other mothers whose babies have been affected by this.

Thank you.

OP posts:

Original poster

fleacircus · 12/03/2008 18:18

Really pleased things went well for you Sallypoo - I hope things keep improving.

Not such good news for me today; I haven't heard from the hospital so rang the BF counsellor who did the referral. It's not going to be tomorrow, she says next Thursday. But I've been let down so often now that I've lost faith in everybody so I'm not sure I believe it.

OP posts:

mcnoodle · 12/03/2008 18:26

Hi cleacircus

Just to say - please try and persevere with the feeding. My ds was tongue tied and like you I was in agony feeding - he was feeding badly all day long and was horribly windy and in pain as a result.

It was diagnosed when he was 5 MONTHS (yes, months) old. By that time he had stretched it himself and I had terrible PND! I fed him until he was 2.5 years old!

It's great that it's been picked up. It will get treated and you will notice a huge difference I'm sure.

Good luck

MarsLady · 12/03/2008 18:26

I spoke to a paed at the hospital last week (I ask them all the same question) and he gave me the same answer that I always get... "We're taught not to bother about it as it doesn't make much difference". I asked him if he knew that many women gave up bfing because of the pain and he said "but the babies are fine". My last question was "I thought that you all encouraged bfing. Surely the fact that women give up long before they might like to is reason enough to check?" Hopefully that gave him some food for thought.

In the past year I've seen tongue tie in about 8 babies. Apparently 16% of babies are born with tongue tie.

mcnoodle · 12/03/2008 18:29

or even fleacircus

MamaChris · 12/03/2008 18:30

aw fleacircus - that's awful. really really hard to have your eyes set on a date then to find out you've to wait another week. where're you going? (I ask bc I went to the royal free, which was on thursdays, and I also had to wait a week longer than I'd expected).

how you feeling? hang in there this next week - hopefully you on the home stretch.

mcnoodle · 12/03/2008 18:35

I still feel very angry that it wasn't picked up. First baby and I just assumed that I was a crap mother. I really found the first six months terrible. Ds was diagnosed with reflux, but in all honesty, I think he was just windy and in pain because of tongue tie.

It is SUCH a simple thing to check. I can't understand why it's not a routine part of the checks on a newborn.

MamaChris · 12/03/2008 18:36

Hi Mars - am guessing you're the Mars who first spotted the tt in my ds at the Whittington 5 weeks ago - am I right? If so - thanks! (otherwise - please excuse confusion )

CarGirl · 12/03/2008 18:46

fleacircus where do you live, can you go to Southampton or is too far?

pruners · 12/03/2008 19:01

Message withdrawn

MarsLady · 12/03/2008 19:11

If you have my breastpump (which I promise I will collect) then yes it was me! And you're welcome!

If you don't... then there's another Mars... lemme at her! ]

hertsnessex · 12/03/2008 19:51

Hey mamachris, how u doing?

Sallypoo · 12/03/2008 20:33

Hi fleacircus,

Please hang in there... its only a matter of days now, and you've purservered for so long...

MamaChris, thanks for mentioning it took a few days. DS is definetly sore this afternoon/evening - I've given him a little calpol to sooth the pain and he's gone to bed now. Will stick with it now until he's 3 months (2 weeks time). I think if there is going to be an improvement I should see it by then.

What would we do without Mumsnet? I just think of all the people who didn't pick up on DS's tongue tie, and without this forum I might not of considered it either.... The BFC who did spot it, also told me that Paediatricians are told to ignore tongue ties... 10 weeks of feeling a failure, and total frustration... where is this so called support for breastfeeding? But we can't turn back the clock - just spread the word. I've told every new mum I know, so that if they are struggling they now know what to look for - I wish I had...

Thanks all, and I'll keep you posted

Sallypoo

moondog · 12/03/2008 20:38

This article from telagraph may help

MamaChris · 12/03/2008 20:55

another Mars?!? I can't believe that's possible! Yes - your breast pump is safe for you to collect at your convenience.

hey hertsnessex - doing good

Sallypoo - it felt different right away, but took a few days for me to see a difference that I could definitely call an improvement, which is continuing even 2 weeks later (though how much I should still put down to tt and how much to ds's development, I can't be sure). Stick with it.

MarsLady · 12/03/2008 22:57

MamaChris... welcome to MN.

weasle · 13/03/2008 11:08

these stories depressingly familiar. i asked mw on day1 if ds1 had tongue tie, but was told no, he was perfectly healthy, why was i trying to find a problem? wish i had had the confidence to argue!

3/8 babies in my nct group had tt. i am always on the look out for it!

yes, babies of mothers who give up bf because of tt and give formula are ok, but it is not ideal, and hopefully we can spread the word and it will become standard practise to look for it and treat EARLY. )sorry, rant over!)

hang in there fleacircus

pruners · 13/03/2008 17:16

Message withdrawn

fingerwoman · 13/03/2008 20:42

it seems crazy that it isn't routinely checked for
I know a lot of babies have it and feed with no problems- but that isn't really the point is it?
and I would argue that actually babies given formula instead are not as well off as if they were breastfed

and the main point I want to make is that there are NO bad side effects of having this quick and simple procedure. so why are all TT babies not given it immediately???

laurz75 · 13/03/2008 20:51

Get it snipped as soon as you can. My DH has tongue tie which was left and as a child he needed speech therapy.
My ds (now 2.8) had TT and the HV said they don't divide them.(She was WRONG! ) He fed well and was a porker but had dreadful wind too. We finally had it done at 17 months under general as he wasn't really talking AT ALL. That was a hideous experience for us all. I am sure his slightly delayed speech was due to it. Tho he has now well and truly caught up!
My dd (nearly 1) also had TT. She had hers divided at 8 weeks and has never looked back. It was relatively painless and we are so glad we did it. Mr Griffiths at Southampton General did both procedures.

Original poster

fleacircus · 14/03/2008 11:51

MamaChris - it is the Royal Free; that's reassuring (sorry, in a horrible way) that you also had to wait an extra week, I was beside myself. Also finally insisted that my HV actually listen to me while I explained the problems I have had feeding and the pain I'm in. She went on about the fabulous BF coordinator who she was going to contact straight away who would visit me at home and refer DD for procedure and help me get her latched on better blah blah blah.

Next morning I got a voicemail from her cancelling our next appointment (the PND assessment one). That was over a week ago and I haven't heard from her since. Am writing angry letters today to PCT, hospital and my MP. Livid and miserable in equal measure.

OP posts:

kiskideesameanoldmother · 14/03/2008 12:21

I found this due to another tongue tie thread. Look at pages 7-9. It may even be worth getting a copy from your GP's surgery. My copy came in my antenatal pack. It is issue no 7. I was well impressed that it was included in the magazine.

MamaChris · 14/03/2008 13:37

flea - glad it's reassuring! what i can also say then is that the mw running the clinic and the surgeon who doe the separation are both lovely, and explain everything and take very good care of the LOs. I think there is only capacity for 4 babies a week, which is why sometimes you have to wait (but the communication about waiting could be better!). If you want any more detailed info of how it worked at the RF (so you know what to expect), just ask.

How's it going? Are you still keeping up the bf?

also i went to a great bf group on a Monday where the co-ordinator referred me to the RF but also showed me ways to improve the latch and lessen the pain until that happened. It really helped just to get listened to properly.

your hv sounds awful. well done for finding the energy to complain! can you request to change her?

Original poster

fleacircus · 14/03/2008 17:40

Thank you - that's good to hear. I shall try to keep believing that it's going to happen next week. I have managed to keep breastfeeding, so far exclusively, but it's been absolute agony at times and I'm getting more and more demoralised. I can't talk about it without crying and that upsets DP so am trying to keep upper lip stiff.

Am on my lactivist bandwagon, just wrote lots of letters complaining about former GP and terrible HV and also to my MP suggesting ways of supporting BF mothers better.

OP posts:

Sallypoo · 16/03/2008 09:59

Hi Fleecircus

Well done for putting the time in to raise the issue. I am very impressed, especially with everthing else you have to do with a new baby.

I too, am going to push for better support. How can it be that we get to nearly three months before these problems are spotted? How many other mums have just given up because of the lack of support?

Stick with it. I'm pleased to report that I didn't use my nipple shields at all yesterday, and my nips are still in one peice. DS does seem to be getting the hang of it, even though I was told on Friday by a BF adviser it wouldn't work!

Sallypoo

angel1976 · 16/03/2008 10:57

Hi all,

My DS was diagnosed with TT on Thursday and we are reall hoping to get the referral to get the snip done on Tuesday with Dr Patel (quoted in the telegraph) at King's. I don't think I can do another week of bf otherwise! As it is, I already have to top up with one formula a day as DS screams the house down in hunger. I pump too but not getting enough to replace the FF.

Also, did you all know that TT is inherited on the male side? I noticed one of you mentioned your DH is TT and your kids were as well. If you DH is TT, it's probably a good thing to check your kids for it...

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