Help! My 17 wk old had tongue tie snip a week ago and now won't feed

(24 Posts)
ButteryJam Sun 28-Jul-13 23:07:54

Hi

I just wanted to bump this. Monikita, how did it go? I'm planning to take my LO to dr levinkind too and would love to know how it went

Splodge27 Mon 24-Jun-13 19:20:41

My ds has been diagnosed with ptt after a long road of 'no he isn't', 'maybe he is' from LC's and bf support groups. After consulting a private LC she confirmed he does have ptt, but I completely wimped out of having the procedure done as I felt I just couldn't put him through the pain now he was 10 weeks old and so aware of what is going on. he has always had good tongue movement but i have had pain through the entire 10 (now 12 weeks) and he cant sustain a latch so we end up latching and relatching repeatedly which is frustrating for us both. my nipples always come out lipstick shaped or pinched with a white line. I have oversupply so he has thrived from the outset but i can only feed in cross cradle and as i say just not a good experience for us both. The LC and i ended up agreeing to leave it a couple of weeks as she said the 12 week growth spurt includes their tongue and jaw growing so things might resolve naturally. we are now at 12.5 weeks and no real improvement. however, I can see ds has an upper lip tie too and it has never flanged out so now I am wondering whether to go for laser to do both as cant bear the thought of having the tt done and the lip tie is the real issue and also know the laser is more permanent.

Can anyone tell me if they were present for the laser revision, particularly if they saw dr levinkind? I heard from the LC when I asked her opinion on laser vs snip that the only doctor in London to do it (she didn't mention a name) won't let parents in the room during the procedure which makes me rather suspicious.

Really don't know what to do but just want bf to not be a constant struggle...

Cheeka Fri 07-Jun-13 21:51:08

Yes, hang in there - it does take a couple of weeks to acclimatise. My DTS is feeding fine now and it did seem to improve after cranial osteopathy.

Monikita Fri 07-Jun-13 16:50:42

Thanks Graciescotland. It gives me hope to hear experiences like yours. I just need to hang on in there. I went to the osteopath today and by the end of the session DD could stick out her tongue, she's just not doing it when she feeds yet.

I am very impatient! Thanks for all the support, it's really helping. I will persist and see how the next couple of weeks go x

Graciescotland Thu 06-Jun-13 21:40:56

Just wanted to give you some sympathy and add my experience DS2 had a tongue tie cut at 2wks which initially helped but scarred badly went back and had it cut again at 17wks it was very fleshy and thick so had to be done under general anaesthetic. I was expected an immediate change but it took about two weeks for him to alter the way he feeds and about two months before he would stick tongue forward for no other reason than he can.

He's now 7mo and feeds like a dream

Monikita Thu 06-Jun-13 21:21:40

So Dr L released the tie for us today. LO is suddenly making a wider range of noises again but have not had much success getting her to open her mouth wide enough and move her tongue out of the way (although it's a lot less painful) when breastfeeding. She's not really able to get much milk out so I'm still pumping away.

He said that she is still very much programmed to bunch her tongue up and has recommended osteopathy. I have an appointment tomorrow.

I knew not to expect a miracle but am so disappointed. I feel so tired of doing the pumping regime all the time and the frustration of both me and DD when trying to latch. I just felt like after 7 weeks of doing this I deserved normal breastfeeding again and my life back.

I feel so down and knackered. I really hope it doesn't take too much longer to happen.

Cheeka Mon 03-Jun-13 18:41:29

Wow, you've done brilliantly to keep on bfing!Hope Dr L manages to sort it out for you.
I did go to a cranial osteopath after the TT division (after we hit problems, rather than straight after the division). Not sure if it helped, we had two sessions but it could be that he was recovering and relearning which improved his latch. Hope it goes well on Thursday xxx

Monikita Sun 02-Jun-13 13:53:32

Hi, sorry for going awol - I've basically been in a cycle of try to nurse, feed ebm (or try - she doesn't like it as much as the boob), express, put lo for a nap, wash up, start again.

We went to see Dr Levinkind and he was lovely. He confirmed diagnosis of ULT and when he looked at the PTT he confirmed scar tissue. Initially he was worried that there was so much scarring he wouldn't be able to do anything but he'd have a closer look when revising the ULT.

It turns out that the LC did a bit of a botched job when she divided the tie the second time (explaining why it felt no different). She'd snipped very close to the base of the mouth, so there was very little release. He even found a nick on a another part where she'd tried to come in from a different angle!

Luckily, he's confident he can release it fully, he just needs it to heal completely first so he has a clean slate, so to speak. We're going back this Thursday for him to review - hopefully he'll still be able to revise.

The lip tie revision actually made a difference - she didn't slip off as much and was able to elicit 2 letdowns instead of just one (still couldn't empty). Dr Levinkind warned that it would probably be more painful though until he could revise the the PTT. He was right - it's excruciating! Just like when she was newborn. As the tongue is healing and becoming more restricted again she's finding it very difficult to feed on me - choking, clicking, only 1 letdown. So I'm without a life again, desperately trying to keep my milk supply up for Thursday and really low. At least she's not on nursing strike anymore.

I really hope the procedure is a success - she just won't take as much milk in on the bottle as when she was briefly feeding well on the breast. It means that she still eats every 1.5-2 hours (even with formula) and has very short naps.

By the way, has anyone used cranial-sacral therapy / osteopathy following a TT division? I've seen it recommended but am cautious as it's not regulated.

Fingers crossed for Thursday!

Cheeka Sun 26-May-13 11:09:20

How's did the appointment go, Monikita?

Monikita Fri 17-May-13 17:06:27

Thanks Cheeka. Just managed to feed her with one letdown on each side by lying down next to her - she's still not opening wide enough but wasn't quick enough with pushing down on the breast. Still, an improvement.

Been on the tongue tie facebook site and reckon she's also probably got an upper lip tie. She never flanges her top lip when feeding - she always curls it in, so I've booked an appointment Dr Levinkind for next Thurs (and cancelled the one with Mr Smith) as I read that laser reduces reattachment on ULTs.

Cheeka Thu 16-May-13 21:28:21

I press inwards towards his mouth, It kind of feels like I'm pushing my nipple (from the outside) towards the roof of his mouth, which gets more breast into the baby's mouth...but it might not work for you as I have rather saggy big boobs! Baby in the football hold....

Monikita Thu 16-May-13 20:13:44

Thanks Cheeka. Maybe I just need to be a bit more patient. I can't try and latch her on more than three times at the moment. She gets hysterical and refuses to go anywhere near my boobs. When you would press inwards, do you mean into your chest or down into his mouth?

It probably doesn't help that my milk supply has tanked so she gets frustrated that the letdown is slow. I'm pumping after every (attempted) feed but yet to see the results. I'll have to do some power pumping this evening and will hopefully see the results tomorrow. I've run out of ebm and so hubby's giving her formula tonight.

Hopefully she'll stop rejecting me soon. sad God I sound sorry for myself!

Cheeka Thu 16-May-13 11:32:55

Just to add in my experience. My DTS was 4 weeks when he had his tongue tie snipped. Like you, feeding was fine straight afterwards but we got into difficulties soon after ...He used to latch on fine before the TT but it was painful. After the TT his latch was painfree but awful, he kept slipping off the nipple and crying with frustration. It was heartbreaking. We both used to fall back exhausted into our pillows after 20mins of unsuccessful latching!!We did manage to feed overall but it was a huge struggle...
A week after the TT snip I could see the tongue tie reattaching slightly and a weird flap of skin under the tongue !!confused I went to see another bf counsellor who dealt with divisions herself and she said it looked like the tongue tie was reattaching and the flaps were scar tissue. the lactation consultant who divided the tie was unable to see me that week but she spoke with the bf counsellor (they knew each other) and their advice was to wait another week and let it finish healing. The good news for us was that feeding did improve, it took longer than the stipulated 2 weeks but it is fine now. I was trawling the web for similar situations because most tongue tie stories i read had instantaneous successful outcomes. I was convinced the TT division had damaged his tongue!But it turned out fine, just had to wait because he took longer to heal and to adjust to the division...not sure if this is a tip to be followed (!) but what I found helpful was to latch him on and then press my finger on my boob above his mouth and push inwards -not sure if explaining it right-to encourage the nipple to draw in deeper. This seemed to help him latch on and I used to let go when I could feel/hear him gulping. I don't do it now but it did help when he was struggling to 'connect'...
Hope this helps...

Monikita Thu 16-May-13 11:26:54

Thanks minipie. I've made an appt with Mr Smith for next Wed. My in-laws live in Woking so it's not far from there. I've emailed Dr Levinkind in case laser would be better. It's our last chance so fingers crossed!

minipie Thu 16-May-13 09:28:46

Yes it sounds like you need to see an actual surgeon not just a LC. Mr Patel is pretty expensive private as I recall (£400?). We saw Mr Graham I Smith based at Kingston, he is much cheaper (£80) and also we found it quicker to get an appointment. another option which may be more convenient for you is Malcolm Levenkind, who works in N London, but not sure on his prices or how long it takes to get a appt (he is a dentist rather than a surgeon, he uses laser instead of just scissors to do the release I believe).

We didn't need a second snip so can't answer you on that. Our first snip (by Mr Smith) was late, at about 16 weeks iirc, and after a week or two there was an enormous improvement in BFing and no problems since. Good luck.

Monikita Thu 16-May-13 07:31:21

Well the lactation consultant came yesterday and minipie you were right - scarring tissue had formed. She did a redivision but my daughter still can't open her mouth wide enough to latch on properly, unlike after her first snip. She's still not able to take lots of the breast in her mouth and so can't get enough milk (which means I'm housebound with all the pumping and expressing). I have a feeling that the LC may not have removed enough. Has anyone experienced something similar with the second snip? And did it improve at all (especially if the baby was 17 wks+)?

Am going to try and get an appointment with Mr Shailash Patel at Kings but I'll have to go private. My local hospital is Bedford but a referral will take ages from my GPs and I need to get seen quickly. I'm basically housebound at the moment with all the pumping and feeding.

I just need an expert to tell me whether it's worth pursuing so I can get it finally sorted or just move on because it's just breaking my heart.

Missingpate Wed 15-May-13 08:04:29

I felt like that but so wanted to breast feed and I'm so glad I kept going as once it is established it is so easy. It was really hard to get it going again but the breast shields made all the difference. They were mainly cos it was easier for lo to latch on to them, as they are much bigger, but once he was happy with them it was easy to get him off and feeding without them, it just took some time. They did also help when i got sore though which was great in those early days when his latch wasn't perfect. I would have given up without them. A happy byproduct of it all was learning that when they are very young it us easy to teach them to feed from both breast and bottle so you can share feeding. My friends' babies who ebf generally refuse bottles.

Monikita Tue 14-May-13 17:34:15

That's good to hear missingpate (not that he was in pain for two weeks). I've been using one of those medela bottles with the funny teat that's supposed to mimic breastfeeding but I might try using cup feeding tonight. She's hardly fed today and I just tried to give her a bottle - she just kept moving it around the mouth and chewing on it - she took 2 fl oz.

We've tried calpol and it doesn't seem to make a difference. She just won't open her mouth wide enough. A friend thought it might be teething so I tried some gel today. She managed to open a tiny bit wider to get more than one letdown but just tried again with the gel and she's having none of it.

Did you use nipple shields because you were in pain? Or does it help babies learn to latch properly?

I'm wondering whether to give it another week before throwing the towel in and going formula. Which would be upsetting seeing as we've come this far.

Aaargh!

onceipopicantstop Tue 14-May-13 14:28:25

Would it be worth trying a dose of calpol in case she's sore?

Missingpate Tue 14-May-13 14:23:39

Ds who fed ok before his tongue tie was snipped refused to at all afterwards. He was very young and ebf and the midwives were against trying a bottle in case he then refused to go back to the breast. We had a tough week or two but it all came good - we started cup feeding and then used nipple shields to get him back on the breast, and an occasional bottle when I was too tired. Ever since he has fed brilliantly both breast and expressed milk in bottles. We are sure he was just in some pain as his tongue healed. Don't give up!

10storeylovesong Tue 14-May-13 14:20:22

Watching this with interest as my ds is due to have his tongue tie snipped this week at 13 weeks. Hope you get it sorted soon.

Monikita Mon 13-May-13 21:35:53

Yes, I thought that initially but apparently it's unlikely in one week. Lactation consultant is coming to take a look on Wednesday.

Am at the end of my tether - desperate to have a normal breastfeeding relationship after 17 weeks of worry and pain.

minipie Mon 13-May-13 21:27:32

it might have healed back together again and need re snipping - this is quite common I believe. i would call the lactation consultant (or maybe a different one this time!) and get them to have a look...

Monikita Mon 13-May-13 21:19:55

I've had lots of problems with breastfeeding since lo was born and she's not been gaining weight very well since she was 9 weeks old (the HVs at the weigh ins just kept telling me to come back in two weeks). One HV finally visited me and put me on a pumping regime. I had to give my little girl 3 expressed feeds a day.

It worked in that she put on 8oz in a week but when the HV said I could back to 1 expressed feed a day, it became very difficult. She would take an hour to feed and could only elicit 1 letdown.

On Saturday 4th May I'd had enough and called a lactation consultant who instantly diagnosed posterior tongue tie. The feed straight after was perfect - no pain and she drained me so quickly! Unfortunately, since Monday, things have slowly deteriorated. There was a bit of pain again and then since Thursday she's been unable to latch properly again and can only elicit 1 letdown. Today she's been refusing the breast altogether and I'm pumping again and this evening she won't even take the bottle. She keeps playing with the teat with her tongue and gums. We've even tried a syringe and she's not having it.

I went to the GP today and he was useless. Has referred lo to a dietician.

I'm so confused - I know she can feed properly because she did it perfectly for two days. Has anyone had similar problems after the snip? If so, how long will it take to sort itself out?

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