Tongue tie paranoia? (Long -sorry!)

[PeerieMootsMum]

Having a bit of a crisis in confidence and now worried I'm going to look like a pfb paranoid mum!

DS is now 9wks old and we've had a rocky path so far but hanging on with the breast feeding. Story goes like this...

Straightforward birth but DS jaundiced and lost 9.8% from birthweight by day 3 and no sign of milk coming in - MW advised top up as much as baby would take. No support in getting BF established just threat of hospitalisation if he lost any more. Thanks to MN inspiration and bloody mindedness we set upon pumping mission and with fenugreek to build a suply - got back to EBF by 3wks but still paranoid about supply.

However next problems started, jnr very windy and wouldn't sleep at all just cried or ate constantly. Was assured this was normal and would pass but he was still falling weight centiles. He was also throwing up a lot so dr prescribed gaviscon. This has helped with the weight gain but feeds are still lasting an hour plus and colicky in evening.

Other symptoms are he struggles to maintain latch, either falling off or sucking nipple really hard, noisy clicks etc., drools milk from corners when eating and when he cries his tongue only comes to middle of mouth.

So I went to feeding clinic where MW said could be occult tongue tie as was 'very well attached' but they don't normally do anything about it. Having heard about side effects of undiagnosed TT I decided to push this and went to GP - saw a locum who admitted shed never seen posterior TT but he seemed to have good movement. Now I've read enough on MN to know drs aren't always hot on this so asked to be referred anyway. She said that it would be 6-8 weeks before we hear and at this age will def need a GA

Having had a teary day today mum is sending me to private hospital on basis the £150 consultation is worth it to put my mind at rest (god love her) so we're going tomorrow evening but now I'm teary as I'm worried I'm wasting her money and I'm being paranoid / will look like a fool as he's now gaining weight ok and he can stick his tongue out.

Sorry for going on just wondering if anyone else has been through this with similar symptoms for TT so I don't feel like I'm just being overbearing!

Can you get to Huddersfield?

There is a dentist there who trained with dr kotlow Dr Kotlow is a leading expert on ties.

Dr John Roberts He uses laser which is preferable to scissors and does not need to use a GA. He will also revise a lip tie, if there is one.

We travelled 480 miles round trip to get ds1 done there (after a previous revision wasn't done properly) and he did a really good job.

There's no guarantee that the private hospital will be any more knowledgeable about tt than any other.

You could also contact Milk Matters or have a look at the facebook tongue tie group.

You've posted about this before haven't you? I recognise your name. Sorry if I am repeating myself!!

Thanks mawbroon, you're not repeating yourself this is my first post although I admit to lurking on some of your other posts - you are one of the reasons I have been uncharacteristically pushy about this. I hope things are going ok with your DS.

We're in Edinburgh so getting to Huddersfield not out of the question but def a trek - will see how we get on tomorrow.

Thanks for responding.

I wouldn't worry too much about tongue tie. My husband has tinge tie and seems to have done OK - he's a healthy 49 year old!
It has never caused him any problems, though the DDs laugh at him because he can't stick his tongue out.

I am in Edinburgh too! So I can tell you that it's 480mile round trip!!

PhyllisDoris, if your husband really doesn't have any of the consequences of untreated tongue tie then he is very lucky indeed.

We didn't realise dh was tt until we started looking into it for ds1. Then it all made sense, the speech therapy, the removal of teeth and braces as a teen, the headaches, the clicky jaw etc.

Which private hospital are you going to? PM me if you don't want to say on here. DS1's unsuccessful snip was done at one of the private hospitals here.

My second daughter was referred to the tt clinic at the maternity unit by a lactation consultant who ran the peer support groups. My Dr and hv weren't convinced but the lactation lady made the reeferal and within a few days we had it snipped. It was 75per cent posterior one.

She didn't cry and was fine about it. Feeding has been so very different. I think with no 1 it wasn't picked up as I had over supply so fed every 2 hours more or less for a year as she couldn't suck properly I now realise. No 2 child is a completely different experience. I also have different shaped nipples -this time they look normal still whereas last time they went shaped with the feeding.

I feel very lucky I had u'd service for free and think they should all be snipped at birth. I expect a great many bf 'failures' are due to tt.

I can honestly say DH doesn't have any of those problems. I never realised tongue tie could affect people so badly. Perhaps there are various degrees of "tongue tiedness"?

Also, not listed there, it can cause allergy/intolerance, digestive issues, high palate and associated dental problems, snoring, sleep apnoea um that's all I can think of off the top of my head but I am sure there is more, much more. You are right though, there are many different types and degrees of ties, but I think your husband is in the minority if it really hasn't caused him any problems other than being unable to stick his tongue out.

I agree they should all be checked and treated at birth UsingaPseudonym, also agree that lot of bf "failures" are probably due to ties.

The problem with Tongue Tie is that sometimes the slight ties cause huge difficulties and the severe ones sometimes don't. However, it is always worth having them checked and having them snipped shouldn't be too much of a problem.

Here's a lovely resource about Tongue Ties Maddie McMahon Maddie is a lovely doula who has a real interest in tongue tie and does a lot of research. Milk Matters are also fabulous. Emma is an IBCLC.