Tongue tied in Sheffield

[bitingfairy]

I have a 7 week old DS who I think has a TT (maybe posterior). It's been checked by several MWs who've said they didn't think it was, but I'm still getting sore nipples even after latch being checked lots of times (by local NHS BFC as well as about 4 or 5 MWs.)

I'm very aware of it as my DD had a TT and although I got a local referral (paed ENT) for her I was told that TT didn't cause problems and basically, tough. This was 7 years ago and I had to use shields to feed. We managed to get to 1 year, but she was never easy to feed and gained slowly. (Her TT has gone now - she pokes it out at me regularly!)

I don't have as many signs as with DD, but, he feeds often, his tongue will go over his gum (DDs never got that far) but never over his lip - it goes down behind the lip, and even this has only started to happen in the last few days (would just cover his gum before). The tip of his tongue is flat, and there's a notch/slight heart shape when he cries. The frenulum looks short to me. I don't have blisters or cracks, but I'm just very sore and pink with a lipstick shape to the nipple when he's finished. I've been checked for thrush - it's not that. He's been gaining well (18oz in 1 week!) but I've also heard TT babies can gain well to start as supply is hormone-driven (?).

The last MW I asked said "they don't snip them here anyway" so I guess nothing has changed locally, and I wonder if they say there's no tie cos they know the Drs won't snip them anyway. :(

I've seen the baby friendly list of places that do TT assessments, but there's nothing local - has anyone else found someone in Yorkshire that does this? I don't mind travelling a bit, but I'd rather not have to drive for hours.

Or is there anything else this could be with a "perfect latch" and soreness? I'm not ready to quit yet - it's not toe curling anymore, but I'd love to be able to feed comfortably.

It sounds like a tongue tie to me - esp the lipstick shape. When I was trying to figure out if DS had one I used to google a bit obsessively. One thing that helped me what someone mentioning about the tongue not reaching the top of the mouth when they cry - does it do that? Because the tongue can be tied down as well as back IYKWIM?

I hope you find someone who can help - it's horrible suspecting a TT but not being able to get anyone to recognise it. We went to a Lactation Consultant in the end - they have a website with people's areas listed: www.lcgb.org/

ds4 had a posterior tongue tie snipped at 9 weeks and it made a difference to us. I will pm you the details.

Thanks for your pm pearlgirl.

molejazz - no, his tongue goes no where near the roof of his mouth. One more point for me to give the hcp later. I'm feeling determined to get this sorted this morning after a really tearful night. I'll check out the link - I think I may end up having to do this privately.

Pearl, would you PM me the same details please?

OP, I've just got a contact from London coming up to Yorkshire tomorrow or the day after who may be able to help. PM me for details if you would like them. I'm trying to get in to see her myself. She's a private TT expert.

I'm in West Yorks and the GPs refer TT to our ENT as emergencies and are normally seen in a week. You could try your GP and ask for this, but they must refer it as an emergency TT, as the usual wait for ENT non-emergencies is 2-3 months.

bitingfairy I am sorry you are having troubles with your local HCPs.
I thank all the stars that my local hospital had no ishoos with tongue-tie snipping - DS had a minor tongue-tie, which I was half-expecting because DH has one so I asked the MWs to check - 3 looked and said "no", but the BF'ing expert ran her finger under his tongue and said "yes". She offered me a referral there and tehn to have it snipped but I hesitated and said we'd see. Anyway - a week later, when I was back at home, a lovely MW came to check on my feeding (was doing 2h at a time and getting oh so sore) and she agreed to do the referral.

The paediatrician who looked at DS said his tonguetie was so minor that snipping it might not make any difference - but it might - he had seen very minor ones snipped and it made a big difference, and major ones snipped and it made next to no difference - did I want to have it done? So I said yes, of course - anything that might help. And it made a huge difference, even though it was a minor tongue-tie.

So don't let anyone fob you off with "oh it's only minor/partial", it's not relevant.

Sadly I was in the NW Surrey area so no use to you in locality - just wanted you to know that grade of tongue-tie isn't necessarily relevant.

Have just been through the same battle and come through the other side. Several HP's (including Oldham TT clinic!) wouldn't recognise it but nipple trauma so severe and very poor weight gain so was determined to get to the cause. It was only thanks to Milk Matters that we got there in the end as their consultant flagged TT and acted as our advocate in locating services. In the end Ann Dobson from London did the procedure - posterior submucosal TT - and it's made a huge difference. She's happy to travel up north - we're in Leeds. Would definitely recommend. Good luck!

I had no joy at the baby clinic yesterday (no HV, no breastfeeding councellor - they were only weighing babies despite advertising a "one stop shop" for advice) so rang a lovely lady from the link molejazz posted. She was really helpful and although she doesn't snip TT has offered to see me tomorrow in Rotherham and refer me to Pinderfields if my GP won't (also seeing her tomorrow armed with information and referal details), and if all else fails has given me the details for a private IBCLC who snips TT in Nottingham.

She also said she would look into the situation in Sheffield again as I was the third person in 3 months who had contacted her with the same question - so maybe things will change in the future.

Thanks again for the support - I was at a really low ebb yesterday. Overall I'm feeling much more positive today.

I'm sure there is someone at QMC, Nottingham who does tongue tie but I have a feeling you need a gp REFERRAL.

Queen's Medical Centre, Nottingham
Contact: Mr Stewart, Consultant Paediatric Surgeon (Tel: 0115 924 9924; Fax: 0115 875 4613). Enquiries and referrals from GP only.

www.babyfriendly.org.uk/page.asp?page=154

I'm in West Yorkshire. The Mid Yorks NHS Trust will clip TT if you are breastfeeding and it's viewed by the ENT consultant as necessary. I have an appt at Pinderfields tomorrow - I got the referral through my breastfeeding counsellor. They apparently make a decision there and do it straight away if needed.

Well it sounds like you have a few leads! Let us know how you get on, good luck :)

GP has agreed to refer me to Pinderfields although she seemed negative about whether they'd do anything "as he's growing well". I thought the aim was to promote breastfeeding so if I have to stop because it's so painful even though he's growing this doesn't make sense to me - it's still someone not bf because of TT. Anyway, I'm still going to see the LC this afternoon and hopefully will get some more tips while I'm waiting for my appt.
Thank again everyone, I'll let you know how we got on after the appointment :)

Good luck bitingfairy - remember, size/grade of TT isn't relevant and it's worth doing to see if it helps, regardless of the opinion of the medic as to whether ot not it will. :)

here in north wales its done very quickly. my 9 wk old had tongue tie diagnosed at 1 wk by midwife after he wasn't putting on weight. A referral was made by her to Glan Clwyd hosp, appt made and procedure done within the same week. its made such a difference though we were told it wasn't particularly bad, he still has a funny shaped tongue though. Incidentally, after hearing its often hereditary my partner realised he had it too. He had op privately with a cosmetic dentist for £100.

Just an update - the consultant at Pinderfields is great. My DD is growing well and putting on weight, but they've still clipped the tongue-tie today because of the difficulties it has caused (soreness, fussy and frequent feeding). The consultant just got DD to suck on her finger, and identified that she wasn't sucking correctly, so did the deed there and then. Hope your referral comes through quickly.

That's reassuring AnaYorks. The LC this afternoon agreed there is a posterior TT and thinks it should be snipped. Hopefully I should get an appointment next week/week after. I'm starting to feel sane again now someone else can see it :)

Hiya,

I live in Rotherham and recently had a baby, now 4 weeks old and suspect he may have a tongue tie, his tongue is heart shaped and I don't think that he has ever poked his tongue out over his lips if that makes sense. My nipples feel quite sensitive and are quite pink, not mishapen after feeds though. He also sometimes clicks when feeding, and quite a lot fusses at the breast and comes on and off. I mentioned the heart shaped tongue to the midwife after he was born and she didn't seem concerned, he is gaining weight and doing plenty of wees and poos. It's just playing on my mind really as I breastfed my 2 older children without any problems and I don't remember my nipples being this sensitive and neither of them had a heart shaped tongue. I feel like he is positioned and attached properly. Who did you contact in Rotherham? Do others think this sounds like tongue tie?

Thanks.

I've replied to your PM with the details yummy82

My HV came on Friday and said that she had never had a patient/client have problems with TT before and she's been HVing for years I think a lot of people here must hit a brick wall looking for answers and just give up :(

Thank you bitingfairy for this thread, I could have written your post myself. DS is exactly the same and I am really sore too. He is putting on plenty of weight but goodness I can't continue to bf in this amount of pain!

I am waiting for the HV to phone to see if she can diagnose him, as I can't get an appt with a dr today.

The whole 'putting on weight' is a bit of a red herring isn't it? Of course some babies don't put on weight (like anabelish's DC) because the TT is preventing adequate milk transfer or they get too tired to suck, but others just compensate for their difficulty! Good on those perservering LOs, but a baby who is using it's jaw to compress the breast, or one who is clamping to hold on to the nipple isn't breastfeeding well and should be helped. As should the poor uncomfy mum :)

Ok rant over.

I know this is an old thread but I’m on here out of pure desperation and many teary nights😭 baby is 5 days old with all the symptoms of tongue tie, my nipples are coming out lipstick shaped and covered in blisters and I’m ready to give in, I caved to a bottle last night and he can’t even seem to maintain a latch on that! Countless midwives have said he’s fine but I know he’s not😭 you don’t happen to still have the details of any contacts please?

Didn’t want to read and run Niamhk10, I’ve been there too. Definitely go with your gut, I wish I had with my first daughter...ended up giving up because of the pain as everyone told me it looked fine and I just couldn’t see a way to continue through it. Where abouts are you? I used milk matters in Huddersfield, West Yorkshire for my youngest’ son TT last year. It was well worth the money and the wait I’d have had on the NHS at the time as there was a long waiting list at the time. But my son had his done through the nhs a few years ago after only a few days wait so all depends what’s going on with the services in your area unfortunately. Could you try nipple shields to give you some temporary relief?
Definitely get a proper assessment where they fully feel inside your baby’s mouth rather than just looking. Or use sticking their tongue out as a measure of whether they’ve got one...my youngest could do that fine but couldn’t move it up towards the roof of her mouth enough so it’s a rubbish indicator that I still hear a lot of people using, grrr.
Sending hugs, its so overwhelming especially when you’re in pain xxx

Sorry I wrote a reply and little man started crying again and I forgot to post! I’m just on the edge of Sheffield but debating travelling to Huddersfield to get him looked at. Thank you so much, nipples are an absolute wreck and I’m so hormonal, I just want to fix it xxxx