Upper lip and tongue tie help needed

[Lozzabell]

So... DS is now 3 weeks and 3 days old.
He was born with tongue tie which wasn't picked up until 1 week old... after which my nipples had already been destroyed.
We had it snipped the same day and things improved a little. Which could've even been me wishful thinking.

Then... 2 days ago I had his mouth checked as his wind it's making him miserable and my nipples have completely split in half!! So I knew something wasn't right with the way he was feeding.

Low and behold, his tongue tie had grown back!! This time is was posterior so much thicker and harder for him.

It was also discovered that he has upper lip tie too.

I began frantically researching online when I was told they leave lip ties because the area bleeds too much and is too traumatic for the baby.

But this then leaves the baby with the probability of speech problems and a huge gap between the 2 front teeth.
I also can't cope with anymore pain. My nipples are so blistered, bleeding and split wide open.
I've been told that the lip tie isn't the cause - it was the tongue tie. Yet threads I've read from mothers who's babies have lip tie, completely contradicts this.

Most importantly though is that I get this sorted for him. How can I accept they won't correct the lip and leave him to have speech problems etc!!!? I can't!

There must be an answer... ?

Hello

My DD had a posterior tongue tie and a lip tie as well. Like you, I was pretty cross that nobody would cut the lip tie. (The medical view was that there was a lip tie but not "severe enough" to treat). I thought the problem wouldn't be solved unless that was done too.

However:

1. Once the posterior tongue tie was cut, feeding really did improve dramatically (as did wind, sleep and a whole load of other related stuff)
2. She is now 18 months and talking up a storm. Ahead of most toddlers her age actually . No signs the lip tie is causing issues.
3. No big gap between her teeth either. There was a gap but it's closed up as her molars have come in (I think this is normal).

So I'd say, the answer depends on how severe the lip tie is. If it's really huge then you could try seeing one of the few people in the UK who will treat them, eg Dr Levinkind. You'd have to go private though. If it's not really huge then I wouldn't worry too much about it (though admittedly this is only based on my experience).

My dd also has a lip tie (not sure of tongue tie)
She does have gap of couple mm, despite all teeth except 2nd yr molars.
Dds speech >500 words at 23m is fine. But not sure as obviously doesnt say all words yet.
I also have lip tie.
It may depend on the degree of attachment. Dds is relatively loose.
We did have lot of wind, sleep issues but think was maybe soya allergy.
Noone ever checked her for amy ties. She doesnt like teeth brushed and difficult to flex top lip which i think is where the bf issue is the latch isnt great. The pain did get better within weeks, but not the constant feeding.

Thank you for sharing.
I've left a message for Dr Levinkind, and also have a gp referral for a paediatric surgeon in Harlow.
It's terrible how there's so little support and help for this. I've had to google everything!

There's also a surgeon called Graham I Smith based in Kingston Hospital (he's the guy who cut DD's tongue tie). He'll do lip ties but only rarely if he thinks they are severe. Much cheaper (80) than Levinkind and may be able to see you quicker.

Thank you!
Yes I need to know the severity of the lip tie first... as I don't really know what I'm looking for.
Also need to know of any disadvantages to getting it done. As far as I'm aware there are only positives to having it released??
I'd love to hear from anyone who's had it done and regretted it.

There seems to be so little support and help for a lip tie!

My only regret is that DS1's ties went undiagnosed for so long. They caused him no end of problems, things you would never think were related to ties. He was 6yo when we finally had him revised properly.

I took DS2 to Dr Levinkind and it was a positive experience too although we did not revise his for now as his problems are minimal.

Mawbroon were the problems from lip or tongue tie?
I've had his tongue revised twice... and saw a highly recommended private paediatrician today re the lip tie. He's convinced I should leave it and it won't cause any problems.
Apparently only the tongue tie was an issue.
So I'm now most likely leaving it alone...

Confused is an understatement !

Mostly from the tongue tie and the impact it had on his orofacial structure. There are pics on my profile before he was revised and you can see he had a pretty thick lip tie.

They all have to be assessed individually really. Some, but not all, lip ties form pockets that can trap milk and/or food which keeps it in prolonged contact with the front teeth causing decay. Some, but not all, kids with lip tie really hate having their teeth brushed because the brush can get caught in the tie. Also some, but not all, lip ties can cause a gap between the front teeth needing orthodontics later to close the gap.

Your private paediatrician may be highly recommended, but does he have specialist knowledge of ties?

We saw one of them (a highly respected paed surgeon) who failed to recognise DS1's posterior tongue tie, and then revised it anyway and he didn't do it properly.

We went to John Roberts in the end and had his tongue and lip done at the same time, aged almost 7yo. He then needed to see an orthodontist here and has been wearing braces and headgear for the last 18 months to rectify the structural problems caused by the tongue tie.

Did you hear back from Dr Levinkind?

Gosh I'm so torn. His tongue is now fine and I've so many people telling me to leave his lip as it's not an issue.
However he's still hurting me when he feeds (his position is perfect) which makes me think it can only be the lip tie causing problems with his latch.
Yes I heard back from Levinkind but I decided to hold fire for a while as I'm sure once I get there, I'll go ahead with the revision!
It's just been discovered that DS has allergies to dairy, eggs and soya so he has 2 weeks of feeling rotten before it's all out my system/milk... so I will wait until he's feeling better before I put him through something else too :|

My DD had her lip tie lasered at 2 months but it made no difference to feeding because by that time she didn't know how to flange her lips (like how normal babies do). To be honest I don't know if removing the lip tie was worth it. Now you can really see her top teeth, they are not covered by her upper lip, and I worry it's going to have an impact on her facial appearance

Despite lasering both posterior tongue tie and lip tie, breastfeeding was and is still painful for me a year on. My DD also has multiple allergies and I just wish I had known about the allergies early on and had put her on specialist formula early on. Now at 12 months we are at a situation where she will only take breast milk and there's no way out, as she is not willing to take supplements either.

Shinesmile I feel for you. Its so hard to know what to do for the best!
Re the allergies - can't you just cut the specific food groups out your diet?
I've been told not to change to formula as the benefits of just cutting out the foods he's allergic to and continuing with breast feeding far outweigh swapping to special formula.
I completely agree with this...