Another tongue tie thread

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Another tongue tie thread

Postby oriel » 12 Aug 2013, 13:11

Zoe has a tongue tie. I spotted this very early on and mentioned it to the midwife when she was two days old. The midwife said that since Zoe could stick her tongue out, it wouldn't interfere with her feeding. (Note: I have never seen Zoe stick her tongue right out. This suggests that at best it's difficult for her so she doesn't do it much.) My subsequent concerns about her latch (she often takes several goes to latch on, and drops her latch as soon as she gets sleepy, resulting in frequent short feeds; she never feeds to sleep and is quite windy) were dismissed variously as being because my milk hadn't come in yet, because my milk had just come in, because it was 'still early days yet', and because I needed to wake her up more.

On Friday I got mastitis. Now I'm on antibiotics and feeling bad for killing all my baby's lovely gut bugs. As advised by the out-of-hours doctor, I'm trying to make sure Zoe empties the breast at each feed. This basically entails poking her periodically to keep her awake, changing her nappy mid-feed at every feed, and burping her every couple of minutes. I can sometimes get her to clear a breast this way; it takes a bit over an hour. Then I pump to finish off. This takes another long time. On the plus side, after a big feed like that she does sleep for much longer.

I saw the health visitor today who agreed that she had a tongue tie but said she couldn't say anything about how it might affect her feeding. She told me to arrange an appointment with the GP.

So when Zoe wakes up I'm going to take her to the GP and get her registered, and then I can make an appointment with the GP, with a view to getting a referral to someone to do the snip. I'm just cross with myself for believing the health professionals and not getting it seen to earlier. I know it might not be the problem, but it's an obvious thing to check.

I also could really do with an electric breast pump. Any recommendations? bearing in mind we don't really have a lot of money. The Lansinoh machine looks good if it works.

Those of you who've had babies with tongue ties – how long did it take you to get it seen to?
Faith 12.12.2007—29.12.2009.
Zoe 19.07.2013.
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Re: Another tongue tie thread

Postby sparkling » 12 Aug 2013, 13:19

(((oriel))) try not to beat yourself up about it - nothing wrong with listening to the health professionals, although unfortunately in my experience not very many are that knowledgeable about anything breastfeeding related...

Bell's tongue tie was picked up by CMW on day 2, referral was very quick and it was snipped on day 5. I think it's extremely variable though, and depends on where you are and the systems in place, as well as on the individual you see in the first place. GPs are rarely experts so I would do my research and go in prepared to argue for a referral if you feel you need to.

Good luck!
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Re: Another tongue tie thread

Postby pimento » 12 Aug 2013, 13:39

I went privately because Edward had already slipped down many centiles and we were going to holiday and I just wanted it done and my HV had no idea and I couldn't be bothered to fight with the GP and wait for a referral (sorry for the long run-on sentence). And I was on my 3rd bout of mastitis.

I have this pump, it's excellent: http://www.amazon.co.uk/Ameda-Lactaline ... +lactaline
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Re: Another tongue tie thread

Postby va.x » 12 Aug 2013, 13:44

Just a quick comment, I would ask to be seen by paediatric surgery same day. Most dept should be set up for this with the breast friendly initiative. If it is late in the day, next morning. I would insist on the gp at least phoning the dept for advice while you are there if you feel the need to be pushy ie gp not listening. Getting a breastfeeding counsellor to back you up helps to, nct/nhs/lll.

(this is the system in Aberdeen, so should be similar there)

Hope you get somewhere fast
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Re: Another tongue tie thread

Postby va.x » 12 Aug 2013, 13:48

And the gp *can* see with out lo being registered. Again pushy and tears at reception if needed... Hope it is not needed but please don't take no/beaucracy as an answer.
V.x
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Re: Another tongue tie thread

Postby Rosie_t_Riveter » 12 Aug 2013, 13:49

Oh (((hugs))) Oriel. It sounds like you're having exactly the same experience as my cousin. She went to a BF clinic (after her GP told her to stop BFing when she had mastitis!) on a Monday and got an NHS appointment to have his tongue tie snipped 8 days later. I thought that was pretty good, but it was down south and I imagine it varies by area.

Is there a BF clinic near you? I have found them way more knowledgeable than NHS staff on how to get a tongue tie snipped locally, how long it will take and who can do it privately in the area.
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Re: Another tongue tie thread

Postby oriel » 12 Aug 2013, 16:47

I should say that I'm not at all worried about weight gain. She's growing and developing just fine. The trouble is that keeping her that way takes a lot of effort and much of my time, and I'm not sure how viable it is long term. That, and I'm co cerned aboutfuture problems with solids, speech, and teeth.

GP appointment booked for Thursday.
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Zoe 19.07.2013.
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Re: Another tongue tie thread

Postby va.x » 12 Aug 2013, 17:57

They will cut for feeding issues like you describe but not for future problems as no good evidence either way.
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Re: Another tongue tie thread

Postby Svea » 13 Aug 2013, 05:57

I recognised O's TT at day 5, had it confirmed by a LLL BF concillor on the same day who wrote a referral for me, and had it revised on day 17. I wish it would have been faster! Bf was agony, clamping of nipple and not a lot of milk transfer. He did wet nappies every day but only one poo between meconium and day 17! So clearly not enough input for the 'poo at every feed' stage of his life! He pooped several times a day following his snip and is now a once a day guy (at 9wks).

I also had a blocked duct while he was still tied, and took great pains to clear the blockage!

You clearly have bf issues if you have mastitis, she takes ages draining the breast and is super windy. How are your nipples? And what is her output like?

Try for the NHS but be prepared to go private. NHS will only snip TT if related to bf issues. They will not treat for future problems nor will they be interested in upper lip ties, which O also has and which prevent a good seal around the nipple, meaning he still swallows a lot of air and needs frequent winding/sicks up a fair bit/may suffer from silent reflux.

I only know of two dentists in the UK who would treat ULTs as well as TT, one in Huddersfield (dr Roberts) and one in London (dr Levinkind), though there may be others.

There are also independent midwives and/or lactation consultants who will perform a frenotomy, again privately.

Any further Qs, please ask.

ETA: http://www.kiddsteeth.com/articles.html
Dr Kotlow's website has articles relating to tongue tie and lip tie. He is peer reviewed and proper scientific, not just some 'fact' you find on the interweb.
Might be worth printing the relevant article to take with you?
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Re: Another tongue tie thread

Postby Svea » 13 Aug 2013, 06:14

Also the lactation consultant said that milk supply is fairly unaffected by poor draining of the breast for the first 6 weeks, but thereafter will dwindle if the breast doesn't get the right signals from baby. How old is Z now?

Also, have you tried laid back feeding and feeding lying down next to he? Both helped with a deeper latch at the beginning. Also pinching your nipple above and below and aiming the nipple at the roof of her mouth while she latches might help her take more tissue for a deeper latch.
Just stop gap measures, mind. Hope they help though.
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Re: Another tongue tie thread

Postby WishingBone » 13 Aug 2013, 07:35

I've got a Medela double electric pump I've been meaning to get round to selling - used for 6m, all scrubbed and sterilised. Works very well. Pm me if you want more details, pics etc.

Re the TT, Smudge had a posterior TT. The original mws were very dismissive because there was no obvious flap of skin. Then a private LC said there was no tie. Then the NHS TT clinic said it was quite a severe tie and snipped it at 4 weeks - immediate improvement to feeding. 4 weeks felt like forever at the time, but looking back it was pretty prompt I suppose - although if a 4 week wait is normal, a lot of people might give up bf in that time.
Bemused parent to the Bear (2009) and Smudge (2011).
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Re: Another tongue tie thread

Postby pimento » 13 Aug 2013, 07:37

Svea wrote:Also the lactation consultant said that milk supply is fairly unaffected by poor draining of the breast for the first 6 weeks, but thereafter will dwindle if the breast doesn't get the right signals from baby.


This is so true. Edward was still 75th centile at 7 weeks (91st at birth) and then plummeted to 9th by 16 weeks.
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Re: Another tongue tie thread

Postby meerkatsmum » 13 Aug 2013, 08:21

I'm so sorry that this is happening. As the bfing mother of a child with an untreated TT and lip tie, I really feel for you. Although money may be a problem, it may be worth going private. My first thought after reading your post was, go see a lactation consultant! Doctors don't know what they're talking about. Again, LC's can be expensive. Is there a breastfeeding drop in centre near you? Or can you contact La Leche League?

Don't beat yourself up about listening to the health professionals! They're supposed to be educated on these things and they're supposed to know what they're talking about. It's not your fault that they don't! We've all been there! (how do you think my almost two year old still has a TT and ULT).
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Re: Another tongue tie thread

Postby issi » 13 Aug 2013, 10:02

This topic makes me angry as my experience with the nhs was so frustrating. I was extremely lucky that I knew an amazing lady at the local baby cafe - she'd been my midwife with snarfy but she was also a lactation consultant. She got me an urgent next day appointment with an LC who came to our house to snip Ollie's tongue tie. Best £120 (I think) I've ever spent but we had problems feeding and with weight gain so it was very urgent for us. Given my experience with the nhs I wouldn't hold out much hope there unfortunately.
DS born March 2009. DS2 born October 2011.
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Re: Another tongue tie thread

Postby oriel » 13 Aug 2013, 13:17

Thanks everyone. Zoe is now three and a half weeks, and since I'm now pumping after each feed my supply should be ok. I hate doing it though, especially after night feeds. I also hate having to keep waking her up during night feeds as I have to stay pretty alert myself to do it!

Thanks for the offer WTBAB, but we decided it was urgent enough that we ordered the Lansinoh, as the cheapest one that looked halfway decent. It arrived today, and I should set it sterilising.

None of the health professionals I've spoken to dispute either that she has a tongue tie or that tongue ties can cause problems. They are just inexplicably reluctant to entertain that this tongue tie could be what's causing these problems.

Roll on Thursday. The NHS page on tongue tie links to a BabyFriendly page listing hospitals where the operation is done, along with phone numbers for the relevant consultants. So maybe if the GP is unsatisfactory I could self-refer?
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