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Tongue Tie

(17 Posts)
tyketyler Thu 05-Feb-15 13:59:49

Hi all

My DS has tongue tie (TT), a paediatrician described "having seen worse". As with most parents on here, I read a lot in the first few days and having discussed with paediatrician, midwifes, nurses and even a surgeon (coincidentally) I feel I've got a good grasp of the issue.

DS seems to get a good latch, but can find it hard to remain there for a substantial period of time. He can get really frustrated, rooting manically around the nipple, sometimes this goes on for an hour or more. He bobs on and off, falls asleep and so forth.

The midwife originally was not concerned, she probably still isn't, but she saw I was getting a bit down and fixated on the TT. So, she suggested we go to the Breast Feeding Clinic tomorrow morning. Apparently, here in Scotland (not sure if it's the same elsewhere), only the Breast Feeding Clinic can make referrals. I'm sure this can't the case, as if he developed dental/ language problems later on in life - our GP would surely need to make the referral!

Anyway, I'm in two minds about the whole thing. On one hand, he is feeding, albeit in small amounts, going through nappies normally etc. And so why would I put him through snip, stress, potential infection, maybe even damage to his salivatory ducts. But then on the other hand, my partner's brother had TT, and developed speech problems, went through therapy. A TT snip might improve DS's feeding, perhaps we could sleep for longer than an hour or two at night. I read in the longer term, TT could impact on his teeth (more cavities), eating certain foods, even kissing! When he gets older, perhaps he'd be annoyed if I hadn't got it done before any problems could start, and before he could remember it!

Of course, overall, depending on which health care professional I speak to I seem to get a different answer, different opinion, some seem not to take it seriously at all. A long time ago, they did it as standard, but apparently the costs are now prohibitive....! That doesn't seem a good enough answer to me.

Anyone got any experience with this? I'm just not sure how much I should push the breast feeding consultant tomorrow to make a referral. Should I beg or should I "wait and see if it causes problems, then deal with it at that point". The surgeon I spoke to even remarked that he may not be able to play certain brass instruments without a snip! Why on earth would I let that be the case!

306235388 Thu 05-Feb-15 16:06:49

I'm in Scotland and 4 years ago my community midwife referred us to the dentist specialist. Dd had her tie cut (with scissors) at 2 weeks. I definitely think it was the right thing as she had a snake tongue from it. Also dh didn't have his cut and speaking clearly is still an effort for him in his 30s.

tyketyler Thu 05-Feb-15 17:26:21

Thanks 306, I'm hoping we're not fobbed off tomorrow morning at the BF clinic, feeling fairly anxious about it all. When we were in the royal I was amazed by the lack of knowledge/ lack of consistent policy.

minipie Thu 05-Feb-15 17:58:27

How old is he?

I got DD's tongue tie snipped at 16 weeks. So, so glad I did. Feeding had been difficult (as you describe) but within about 7-10 days it was so much better. She was also able to go longer between feeds, sleep better and had less painful wind. Oh and she also jumped a few centiles weight wise (and has stayed there ever since) so although she was gaining weight ok before, it clearly wasn't as much as she naturally needed iyswim.

And that's without even considering the possible long term effects (look up mawbroon's posts for some of the possibilities here).

I have read in several places that you can't tell the severity of the effects of a tongue tie just from looking at the tongue - it's all about how it interacts with their particular mouth shape, your particular boob/nipple shape and size, etc.

The later you leave it, the harder it may be/longer it may take for DS to relearn a better latch.

The snip took 30 seconds and DD had forgotten about it within 2 minutes. Never heard of any baby getting infection from it. (I have heard of it reattaching though so be on the lookout for that).

In summary: I'd get it done, asap.

stargirl1701 Thu 05-Feb-15 18:05:50

There is a FaceBook group for support.

Iggly Thu 05-Feb-15 18:06:42

How old is he? Under 12 weeks? If so the snip is easy. Get it done!

BadgerFace Thu 05-Feb-15 18:17:57

I had DD's snipped at 10 weeks. I wish I'd done it earlier but we got to a point after a really rocky start with breastfeeding (having been told by three different midwives there was no TT!) where she would feed so I left it as I did not have any pain and she'd found a way to feed (effectively at the end of my nipple!).

What the consultant said to me during our appointment at 10 weeks was that although DD has found a way to feed it would be harder for her to get enough milk as she got bigger. She was also very sleepy a lot of the time as the feeding was so tiring for her. I had it snipped on my sofa in 30 seconds. The other thing I was told was that she had been damaging my nipples even though it didn't hurt when feeding!

DD definitely fed better after the snip and had less wind. My advice would be to do it sooner rather than later. We left it so late that DD had started to sleep 4-5 hours (finally!) by 10 weeks but as part of the post-snip procedures I had to wake her up every three hours through the night to feed her to stop it reattaching... Which was pretty depressing and made me kick myself for not going with my instincts and sorting it out earlier!

tyketyler Fri 06-Feb-15 11:23:54

thanks everyone - really appreciate the boost!

The woman from the Breast Feeding Clinic took one look and said it needed snipped. She was amazed it hadn't been done in hospital and went to get her colleagues to take a look too. She said it was so obvious.

She phoned the hospital to try and get us slotted in for THIS afternoon. However, came back to explain that basically the TT clinic has been "cancelled" for the next two weeks. No information as to why. I've been calling to find out more, someone will call me back apparently.

I also phoned Spire Hospital to find a price for going private, which I've booked... as a fall back I guess ... and also because the receptionist was very pushy on getting my details into their system (I've not paid yet but they've got my CC details!). The cost is in the region of £350-450....... shudder.

So, between a rock and a hard place. I'll phone the hospital again this afternoon to try and get an answer. The woman from the Clinic remarked about "all those parents who don't take their children in". I think it's awful the NHS is completely failing on this front, and I'd imagine they have no plans to change their approach.

tyketyler Fri 06-Feb-15 13:19:43

Just off the phone with the hospital - apparently they aren't doing any snips this month due to a staff shortage. It's £320 to go private, according to the midwife. So either go private on Thursday next week, or wait until the 27th. Want it done asap to give best chance to DS of relearning latch etc, but annoyed at the state of affairs.

stargirl1701 Fri 06-Feb-15 13:30:39

Phone your MSP.

Try the media?

Gingerandcocoa Fri 06-Feb-15 13:34:44

How old is he?
My DS has his TT snipped when he was 2 weeks old, it was really quick and he cried for less than a minute! It was definitely worth the money.

Only thing I'd say is make sure you do the exercises afterwards diligently as I suspect my sons TT grew back, though by then I was giving up BF already, so cannot say for sure.

tyketyler Fri 06-Feb-15 13:57:10

He's 9 days old.

Yes - I will re: our MSP. I'll also write to the Cabinet Secretary for Health, which is Shona Robison, I believe.

minipie Fri 06-Feb-15 14:49:47

I don't suppose you could travel London direction? We had DD's tie snipped by a surgeon in Kingston, privately for £80. Only a couple of days' wait if that. His name is Graham I Smith and website is here. Appointments are generally in the evening iirc.

Bloody ridiculous that there is so much pro BF rhetoric, targets etc in the NHS but when someone wants to BF there isn't the funding for the simple procedure to help them hmm

tyketyler Fri 06-Feb-15 15:17:54

Really good website, plain English. Excellent price too! I'd have no hesitation with that.

Our midwife called to ask how it all went, thinks we should wait as it's so much money and its not causing any nipple bleeding, just regular feeding.

BadgerFace Fri 06-Feb-15 17:23:26

Wow, that is a ludicrous price! I paid about £100 in London for Ann Dobson to come to my house. She has a good website too.

Any friends/family in London you can visit and then book an appointment?! Although I know travelling that far with a newborn isn't ideal. But I bet it could be done quicker. Than next Thurs. My appointment was about 2 days after my initial enquiry.

minipie Fri 06-Feb-15 18:43:45

Ann Dobson sometimes works West I believe. Worth calling/emailing her to ask if she will be near Bristol in the next few days and has a slot?

I agree that you are probably in the (relatively rare) position of being able to wait, since you're not in pain and DS is gaining ok. That said, I suspect yours is a posterior tongue tie, and they are known for getting more troublesome as the baby grows and feeds more... also the longer you leave it, the longer it takes for the baby to relearn to feed with their snipped tongue (some babies get pretty upset about the change temporarily, though dd didn't). Hmm swings and roundabouts! in your shoes I wouldn't pay £350, would rather wait the two weeks I thnk, but I would explore any cheaper private options ...

fishpietea Fri 06-Feb-15 20:03:49

I paid £100 near London and that was the recommended contribution, not even essential. That was through a local breastfeeding group. My son wasn't even 2 weeks old and it made an instant difference

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