Your experience with posterior tongue-tie please

[helloelo]

Hello

I still EBF my 10wo but it's not been easy. I have thrush, vasospasms, and generally it's quite painful.

I posted a rant recently and someone mentioned posterior tongue-tie, which I researched and checked on DS. Symptoms are quite consistent: I can feel a hard "string" under his tongue, he can't stick it further than his lip and has a frank curve in the middle. He might also have a lip tie.

It's going to be a nightmare trying to find anyone who can diagnose or reassure me in France, let alone operate. So I was wondering if you could give me hope and strength by sharing your experience with this type of posterior tongue tie. Maybe I can live with the discomfort once the thrush is gone but I'm worried about his speech and teeth...
WWYD?

I have two DC both with tongue tie. DC1 wasn't diagnosed until about 6 weeks, it was horrendous. With DC2 we knew what to look for, DH spotted the tie just after birth and it was released a few days later. There is no way that I could have continued bfing DC1 without having the tongue tie released. After the release it took about 2 weeks of hard work to get my milk supply back up and onto ebf, and for DC1 to learn to feed without the tie, but it was well worth the effort. The lactation consultant who released the tie was really supportive through this.

If it is hard to sort this out in France, I would book a day trip to the UK to get the tie diagnosed and released if needed.

I do appreciate that this probably isn't the experience you were hoping to read about...

I too ebf my DS who had a late diagnosed posterior TT (6weeks). We had it cut, it re-formed, so we had it lasered by a paediatric dentist who is an expert in TT and upper lip tie. I couldn't have continued to feed with the TT as is was as it was excruciatingly painful (had already had thrush and vasospasms- but looking back I'm sure it was all due to the TT). Looking at the evidence regarding upper lip tie I'm glad I had it done. National guidelines are to leave it alone, but in practice it can cause gapping of the teeth and speech problems. We paid and had it done in Huddersfield and the dentist was telling me he had clients flying in from Ireland, Saudi, France to see him for the procedure- we travelled 3 hours.

DS will now feed beautifully on one side, he damaged the other side too badly and has never relatched - I express and donate that side.

Sorry, again not really a story you want to hear!!

Thanks a lot, you're both right, it's not really what I want to hear but it's a good thing to have opinions. I think I'm stuck because if DS has TT, it's subtle and I'm not sure I'll trust an unknown consultant here. I'll give a call to the local leche league.

I had a similar experience to previous posters. My ds1 had a tongue tie which wasn't picked up until I got mastitis at 8 weeks of painful feeding. After seeing numerous breastfeeding councillors and being treat for thrush, I eventually paid to see a private lactation consultant milkmatters.org.uk/ She immediately saw the tongue tie and I arranged for it to be corrected that weekend. Two weeks later we were feeding great and I managed to breastfeed until 10 months.

I now have ds2 who is 7 weeks and he also had a tt. I noticed straight away, although I had to ask 3 midwives to check before it could be confirmed. I arranged to go back to Charlie at Milk Matters straight away and got it snipped at 2 days. Even by then though my nipples were in agony and I had to express and bottle feed for 48 hours. We are now back to ebf, and with a bit of osteopathy as well are doing pretty well. There is no way I could have continued without having the tt sorted. I don't know how I lasted so long the first time and knew I couldn't go through that again with my second. Even though was treated for thrush the first time, I don't think I actually had it, it was just the pain from the bad latch causing vasospasms which have the similar stabbing pain after feeds. I remember at 7 weeks in last time I couldn't even bare for my clothes to touch my nipples they were so sore and I dreaded every feed. It is not a nice place to be in and I really feel for you.

Check out milk matters website milkmatters.org.uk/international-service-tongue-tie-talk/ as it says they are able to do some diagnosis via email/phone/Skype. The woman who does the tt snips is based in London so maybe you can go for the day, or once you get the diagnosis they can help you find someone I France?

Good luck and I hope you manage to get it sorted.

Same for me, DD2 had posterior tongue tie, missed 3 times in hospital and only diagnosed due to persistence by me! Snipping ugh as completely changed feeding. She was only a wk old but I would have given up otherwise as soooo sore. The problem we have is she prefers the ebf expressed bottle now rather than my slow let down so we are battling with that!

Good luck

My friends son had this and she drove to Southampton to have it snipped privately. Has made all the difference to his feeding and weight gain. He is breast fed. Good luck

This was done only in the last 2 months.

My DD2 had anterior and posterior TT, and upper lip tie.

She started screaming trying to feed when my milk came in, which alerted me to the problem. The anterior TT was snipped on day 4 by a private lactation consultant in London and things improved q bit.

However I felt that things still weren't quite right with her feeding. I could see an upper lip tie and, from memory, if those are present a posterior TT was likely.

I took her to Dr Malcolm Levinkind who is a paediatric dentist specialising in tongue tie at around 6 weeks. He was excellent and lasered both. The feeding took a little while (a week or so) to improve but everything ?as so much better. Still feeding now at 17mo.

DS couldn't feed properly due to tongue-tie but frustratingly it wasn't diagnosed until I'd moved over to bottles (this was after asking for help repeatedly from midwives, health visitors & BF consultants, they all checked the latch but not his mouth). We didn't get it snipped and his speech appears to be fine now he's older. I don't really regret anything now, he thrived on the bottles and moving over did wonders for my mental health. Just letting you know that it isn't always the end of the world.

Dd1 I had horrendous time feeding but her latch was so poor she bot me through every feed and could not physically syck a bottle. Posterior tie finally spotted at 8 weeks and cut. The due to not being cut enough and regruwth 3 further cuts at 12,14 and 24 weeks. By six months it was fine and we went on to feed till 14 months.

Undiagnosed posterior tongue tie is often misdiagnosed as thrush, as I discovered when DS was about 8 weeks old. I'd had agonising pain feeding, vasospasms and we had both been treated by the GP for thrush.

I paid to see a private IBCLC who diagnosed and cut a posterior tongue tie. She then gave me tongue exercises to do on DS; after a week it was improved, after two all symptoms had completely gone.

I did some reading and the IBCLC was right, thrush is apparently really overdiagnosed, as the symptoms are similar and so few medical staff are knowledgeable about tongue tie.

Could you travel to Britain for an appointment with an IBCLC?

Update (and hope for ppl in similar situation)

I got DS (then 11weeks) to a specialist, the same department dealing with cliff palates, turned out tongue ties are getting more attention these days, at least in that paediatric hospital.

He diagnosed a posterior tongue tie and a lip tie. Sorted it out, DS barely cried and was boobing 2 mins later. They filmed the procedure for training purposes.

... And now I get it, BF really doesn't hurt at all... :)