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posterior tongue tie, any experiences?

(6 Posts)
zoemaguire Sat 08-Mar-14 14:00:11

3 week old dd, from her perspective, is feeding fine and gaining weight. From mine, not so great. Nipples are shredded, am on antibiotics for mastitis, keep getting painful blocked ducts. Her latch is dodgy, keeps clicking and on one side the pain carries on for the whole feed. She is dc3 and I fed the other two for 18mo each, so I'm fairly clear on the theory of a good latch, but dd isn't!

I went to the bf clinic yesterday and one of the feeding specialists diagnosed possible submucosal posterior tongue tie. She said there was a little dimple in her tongue, and that she could feel a lump under the tongue. Her tongue moves ok but it does have a distinctive 'cup' shape. She also has suck blisters all round her mouth after feeding, suggesting she is clinging on with her lips. She apparently has assymetrical suck, meaning there is a quarter of each breast that she isn't draining.

Problem is, clinic lady said tongue tie, if it is there, is very far back and would be hard to get to. She wouldn't feel happy dividing it and said that if I got a referral to hospital (Bedford is nearest to us), they would probably say there was nothing they could do. She gave us the name of some cranial osteopaths and said we should try that first. But I'm pretty dubious about osteopathy, and dd so far is a happy, contented little thing who sleeps well (relatively!) and rarely cries. I dont really want anybody manipulating her skull! I also don't have an easy 200 quid going spare for 3 or 4 private sessions just on the off chance it might help her latch.

If you've got this far, my question is whether anyone has had a 'non-obvious' posterior tongue tie divided, and by whom? Happy to go private if it is on a good recommendation. Alternatively, did anyone with this issue just wait it out , and see improvements as baby got bigger? I'm very aware that all the problem is mine here. I don't want to put dd through unnecessary trauma. On the other hand, ouch my boobs are sore! Last time with ds I also very nearly got a breast abcess (different reasons for bad latch in his case), and I really don't want to go there again.

stargirl1701 Sat 08-Mar-14 14:08:06

Yes, but not a good one. I was admitted to hospital at 10 days post birth with blood poisoning from infective mastitis. Nipples shredded and dripping blood. I found out, after I stopped breathing, that was allergic to flucloxicillan (sp?). In for 8 days. I had to stop feeding on right side and pump only as milk was so contaminated with infection. I could start the pump and then pull out the milk in long green strings like spaghetti. No-one at the hospital (major teaching hospital) had seen anything like it. They initially thought I had retained products or a breast abscess. The Infant Feeding Co-ordinator had read about it though.

I bf through my hospital stay but it all fell apart I got home. I gave up and then relactated 8 weeks later. I was able to get a latch by using a biological nurturing position. The LLL helpline were really helpful with this.

DC2 due in Aug. I am scared it will be as bad.

Phone a bf helpline today and see if anyone can help. You also need thankswinethanks

zoemaguire Sat 08-Mar-14 15:26:08

Oh stargirl that sounds horrific! I'm not surprised you are anxious about next time, though one thing I've found is that each new dc is very very different to the last one in feeding terms!

I don't think luckily that things are too bad right now - i got good advice at the bf clinic yesterday about latch in the interim. But the more I read about it the more I think the tongue tie explains our issues. I really want to try to get that sorted asap, but I also don't want to waste time going somewhere only to be told that they don't revise - or even believe in - posterior tongue tie!

stargirl1701 Sat 08-Mar-14 19:26:06

The LLL may know who. We were unable to find anyone (Scotland).

bigwellylittlewelly Sat 08-Mar-14 19:33:04

Yes. Dd2 had it cut, very far back at Norwich university hospital where they are carrying out a research project into methods to improve breastfeeding rates.

dd1 was. Tube fed. Went to hell and back to get her feeding. Dd2 healthy and fed right away but regularly vomited. I just knew she wasn't feeding properly despite putting on weight. Gp checked for hernia but eventually an bfn supporter saw it. Snipping helped but nine months later she is still a rubbish feeder and along with eating well I think she will stop breastfeeding soon.

zoemaguire Sat 08-Mar-14 22:14:02

Thanks bigwelly, I'll ask GP if she can refer there, it's reasonably close.

It's frustrating - the more it goes on the more I'm sure tt is the problem, but if even a lactation specialist won't do the revision, it feels like the options are very limited.

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