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To ask why lip tie isn't taken seriously on the NHS

(27 Posts)
fluffandnonsense Mon 03-Mar-14 22:43:19

I think my daughter has a lip tie but trying to find someone to diagnose it and treat it is like pulling teeth. Apparently the NHS don't see it as a problem but they clearly haven't experienced the hell that is feeding a newborn with a lip tie. Her latch is shallow and makes me really sore sad

It looks like I'm going to have to fork out £250 and travel 2 hours away to get the help I need.

Has anyone else managed to get it treated on the NHS? Also what were the symptoms and did having it cut help?

Thetallesttower Mon 03-Mar-14 22:50:24

Search under 'tongue tie' and you may find some more advice. My dd was tied at the top (between teeth when they came through) and bottom, and yes, it does hurt more to feed a baby with tongue tie. I paid to go to Mr Griffiths (I think his name is ) in Southampton, however, this was a few years ago- you should look out the NICE guidelines on this on the web as I am pretty sure they state that if it is affecting feeding, it should be cut. Take these to your GP/midwife/ask for referral.

oohdaddypig Mon 03-Mar-14 22:51:16

We had this. Symptoms exactly as you describe. Poor you - it's sore. In our area it's known as a tongue tie. I think that's the same thing?

There was a programme on radio 4 about exactly this the other day. NCT were pushing for this to be a standard check on newborns. I totally agree.

In our area there is a huge waiting list - I would have given up breastfeeding as my nipple was so cracked. In the end a surgeon friend pulled strings for the procedure to be done. Literally 5 seconds and baby didnt even flinch. Her latch was perfect thereafter.

I appreciate this isn't massively helpful to you but I am always trying to raise the profile generally. If I was you I would beg GP for urgent referral and perhaps express in meantime and do a bit of combined bottle/breast?

It's so unfair these babies aren't helped sooner sad

Good luck

oohdaddypig Mon 03-Mar-14 22:54:15

Ps it does seem ironic to me the NHS is baffled by our low breastfeeding rates. This is definitely a big factor. I suspect many many cases of tongue tie simply aren't picked up

honeybeeridiculous Mon 03-Mar-14 23:05:59

My local hospital checks it at the first babycheck. Happens to be mr Griffiths hospital, hes fab.we have trained midwives who can snip them I hope you find somebody to do it.

gingerbreadshoes Mon 03-Mar-14 23:06:44

A lip tie alone shouldn't cause a problem with latching on as the top lip doesn't need to curl outwards in the same way tge bottom lip does.

It could however mean that your dc has a posterior tongue tie which wouldn't necessarily be obvious but would affect the latch.

See if your hospital has an Infant Feeding Coordinator and get in touch with them to discuss the possibility of a posterior tt.

Kippersbigfeet Mon 03-Mar-14 23:13:05

My son had both a tongue tie and an upper lip tie. The tongue tie was snipped by an NHS paediatric dentist. When I asked about the lip tie he saud they don't do anything with them as they don't tend to cause any problems and sure enough we have had absolutely no problems with feeding since the tongue tie was snipped. Having seen his lip tie I now realise that my daughter also had an upper lip tie but I had never noticed because it didn't cause any problems.

It does sound like there may be an undiagnosed posterior tongue tie.

Rinoachicken Mon 03-Mar-14 23:16:15

Lip tie and tongue tie are different things, just to clarify for everyone.

I believe my son has upper lip tie but can't get anyone on NHS to take it seriously.

From what I've found out online though it is more of a dental problem (between top teeth) and it is a dental/orthodontist that treat it once teeth have come through, so maybe ask your dentist?

I'm going to ask mine anyway.

MrsMook Tue 04-Mar-14 02:17:37

I'm still feeding DS2 10m, and I'm suspecting a lip tie. Since his top teeth came through, it looks like he's joined from between the teeth to the lip which seems low. He has a shallow latch which tends to drift off during feeds. He struggles with bottles and just chomps on them. He dozes during feeds and still night feeds, and in recent months, a bad latch on one side can trigger sharp painful nerve pains after feeds on one of my breasts. Ive ended up feeling stabbed by knitting needles keeping me awake two hours after a feed. I've just had mastitis for the second time. I didn't have problems like this in 13m of feeding DS1, and I think had DS2 been my first, I couldn't have gone this far. As he's getting bigger, and his teeth have descended it's got harder, and he's not reducing his feeds like his brother did. I have decent feeds mixed in and few problems on one side, but I'm gradually getting to the point of fearing feeding on the other.

Right, I'm going to the HVs tomorrow. Wish me luck...

CrohnicallyFarting Tue 04-Mar-14 06:55:23

DD has a lip tie and we had a lot of breastfeeding troubles. I managed to get a referral to the Infant Feeding Coordinators and they diagnosed DD with tongue tie which had been missed up to that point, and it looks like it was the TT causing most of our problems. Her lip tie remains uncut as it is too thick for a simple snip, she would have to go under GA and there isn't enough evidence that the risk is worth the benefits.

If your local hospital has an Infant Feeding Cafe or drop in, you could try going there, or I found my HV to be very sympathetic and helped me get the referral I needed. Also check out your local sure start for breastfeeding support groups.

WitchWay Tue 04-Mar-14 07:00:02

The upper lip "tie" is completely normal, called the frenulum, finding one split is a marker of domestic abuse because it can easily be ruptured if the face is punched, nothing to do with feeding, best left alone unless causing problems with teeth.

CrohnicallyFarting Tue 04-Mar-14 07:00:17

Here's a website, it's by an American dentist but it has lots of articles on lip tie, what it looks like, and the potential effect it can have on breastfeeding.

anothernumberone Tue 04-Mar-14 07:04:38

Sorry you are going through this OP. Lip tie does indeed cause problems with or without tt and very often you get practitioners who do not recognise problems with either. Get checked for tt and find a practitioner who does both it is worth it and they do exist.

CrohnicallyFarting Tue 04-Mar-14 07:05:08

Not always WitchWay. The majority if us do have a frenulum, but it doesn't interfere with the normal movement of our lips or tongues. Whereas DD's lip is literally tied down, if you lift it she cries (presumably it hurts) and you can't fold her top lip back far enough to touch her nose. Whereas I have a normal frenulum and I can easily lift my lip and fold it back so it covers my nostrils, without any pain.

If I were to suck my thumb or finger, my top lip will flange out whereas DD's doesn't have enough movement to do that and remains folded under, which means making a good seal is hard for her.

anothernumberone Tue 04-Mar-14 07:08:08

By the way as you can tell from this thread lip ties and tongue ties are controversial you need to find practitioners who believe in them. We were lucky enough to have a doctor who was forced to believe in the issue even after successfully bf 3 children his wife went on to have 3 more with tt it is amazing how personal experience even vicariously through his wife changed his mind about something he thought did not cause problems until then.

nearlyreadytopop Tue 04-Mar-14 07:11:04

Ds has upper lip tie and tt. I was told its extremely unlikely to have a ult without a tongue tie.
Some tt cause no problems. Ds made feeding hellish. As others have found no health professional would take it seriously. I ended up in desperation getting in touch with Charlie at Milk Matters. She was able to diagnose the problem and I paid to have the tt snipped privately.
I fully sympathise with anyone having tt problems. Ds was finally snipped at 6 months and his latch improved.
In the meantime if you look up the exaggerated latch technique on Google it might help give a deeper latch.

CrohnicallyFarting Tue 04-Mar-14 07:11:37

Yes anothernumberone even though DD could not breastfeed at all till she was 2 weeks old, and struggled with bottles (never heard such a noisy baby!) it took us till her 6 week check to get a referral to an expert as no one believed in the possibility of a tongue tie. We got the referral for her lip because it is clearly so abnormal, but the expert checked her tongue as well.

ChopperHopper Tue 04-Mar-14 07:20:57

My 9 week old DS had his tongue tie snipped at 6 weeks. I am also convinced I can see a lip tie, but when I pursued it with the Lactation Consultant I was told "lip ties don't affect breastfeeding".

I beg to differ as we still struggle with a very shallow latch and terrible clicking. Each feed takes ages as he keeps slipping off. Is there anywhere in the UK that takes it seriously? It's caused us so many issues, not least because he gets tired at each feed and has had a major issue with foremilk/hind milk imbalance which totally messed his poor tummy up. I have to do breast compressions at every feed, which does help.

There is a Dr in the US called Bobby Ghaheri who takes tongue and lip tie very seriously and I've followed a tongue tie group he seems to be very involved with called Tongue Tie Babies Support Group. You could also try posting there for support.

CrohnicallyFarting Tue 04-Mar-14 07:28:55

chopper are you absolutely sure the Tt snip was successful? I have heard of babies' tongues reattaching, or not being snipped enough the first time round (sometimes they snip the visible tie but the frenulum can be tight further back too so the tongue still isn't free), so might be worth you getting a second opinion just to make sure.

CrohnicallyFarting Tue 04-Mar-14 07:32:40

DD's lip tie causes her to slurp and slip sometimes, but the clicking went a long time ago and so I'm pretty sure the clicking was her tongue tie.

PonceyPeas Tue 04-Mar-14 07:33:42

My DD had her tongue tie snipped at 3 weeks, however she still has a pretty bad lip tie (can't move her top lip at all and I'll bet a lot of money that she'll have a big gap between her top teeth when they cone through). I'm going to see my HV about it this week and am also going to talk to my dentist. I'm expecting to have to pay to have it fixed but my opnion is that to pay now to have it snipped will be cheaper than paying for the braces/orthodontics that she'll most likely need in ten years or so if I don't get it snipped

Ticklefeet Tue 04-Mar-14 08:09:34

Is it stopping the lip from flanging?
Call your family dentist, they can look at it and they can cut it for free, it is listed under the nhs tarrif. If they are not comfortable doing it for some reason , they can give you urgent referral to the Maxillifacial surgeon at your local hospital.

If your dentist is not convenient, your doctor, midwife or health visitor can give you this referral .
(If you have no luck with them and the baby is loosing weight, I personally would go to A&E because I think a newborn not being able to feed needs immediate attention )

anothernumberone Wed 05-Mar-14 10:48:56

Breast feeding requires a seal to be made around the nipple for feeds. Bad lip ties don't allow the top lip to flange out and affect the seal. Even after ds got his tt done I could feel him sliding off the latch as the feed went on and he got lazier because he always had his top lip turned in. Any lactation consultant particularly who thinks lip ties don't caused problems on their own needs to revise their training IMO.

KellyElly Wed 05-Mar-14 12:42:12

My DD had this and I gave up breastfeeding after three weeks due to this. I didn't realise you can get it corrected. Do you get it done through a dentist or a doctor? DD is now 4.

anothernumberone Wed 05-Mar-14 14:28:39

Kelly I gave up on my first 2 children with absolutely destroyed nipples it was not until number 3 that someone even diagnosed the issue. Ds has been bf for over 2 years after getting ptt done. Lt still caused problems though so I would get both done if I had my time back.

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