Really concerned about tongue tie

[AnythingNotEverything]

Hello all,

Baby is due in a few weeks. We've just got back from our NCT breast feeding class (which I really enjoyed!) but I'm now a bit concerned. My DH is almost certainly tongue tied (still) and DS (13) had unexplained problems latching, which meant we spent days in hospital after his birth and I never successfully latched him on. We expressed for him instead, which I'm loath to do again.

These two things apparently put us at high risk of having a baby with tongue tie this time. If this is the case, can anyone give me hope that this won't mean months and months of arguing with incompetent professionals trying to get a diagnosis?! I really really want to breastfeed this time.

How long did your diagnosis take? Are midwives really as clueless as I read on here?!

TIA.

Where are you based? There are a couple of dentists in the UK who trained with Dr Kotlow who is a leading expert on ties.

If you were able to get to one of them in the event of your baby being tied, you could be sure of getting knowledgable advice/treatment.

They are Dr Malcolm Levinkind in East Finchley, and Dr John Roberts at the Cote Royd Dental Practice in Huddersfield.

If I had ds1's baby time again, I would have been hotfooting it to one of those guys. If your older ds is tied, it might be worth having him looked at too (and your DH).

DS1 is almost 8yo and had his done this time last year by Dr Roberts. He says he is really glad he had it done because he can move his tongue so much better now and it doesn't get tired any more. Plus, revision resolved some of the many health problems he was experiencing.

I had a really good experience getting posterior tongue tie diagnosed and treated. I went to breastfeeding support group first and told them all the symptoms we were experiencing and asked them to check my latch and for tongue tie. I then asked my hv for a referral, explaining that I would like someone to look and tell me if it was tt or not. I was referred to breastfeeding expert at local hospital and had an appointment one week later where it was snipped there and then.

I would suggest keeping an attitude of openmindedness when asking for a referral, so that instead of saying 'this is tongue tie, treat it', you're asking 'please can someone tell me if this is tt or not'.

I think it did help that this was my second dc, I think you ate treated a lot more like you know what you are talking about if it's not your first. That's not right imo, but it did work to my advantage here, as I was able to articulate how I knew things should be, and the ways in which they weren't like that.

Google reputable lactation consultants in your area. See them pre birth so there is someone on hand to help / diagnose tongue tie if there. If so they can refer you to the best person to cut it locally - whether NHS or private.

Are you near Kingston - Dd's tie was snipped by a surgeon there (Graham I Smith) - he will see babies privately (£80) without any diagnosis or referral, basically he will decide himself if there is a tie worth snipping or not. so it's diagnosis and treatment all at once iyswim.

(although in fact I did see a private LC first who diagnosed dd).

Thanks! I'm not far from Huddersfield so that's good to know.

DS has no effects of TT now if he did have it as a baby, and I'm not sure I could convince DH to get his snipped!

I think I'd just like to be prepared, and I know what you mean about a certain credibility you gain with subsequent children! Not right, but visible I think.

I'll make sure we gave the details for our local LC and I've been told our community midwifery team has a great bf support lady so will discuss with my midwife.

Thanks so much.

We found someone to do our sons tongue tie through our NCT breastfeeding councillor. She was lovely and could see PFB immediately (hospital waiting list was weeks). If you're in north London you could private message me but if not try asking your NCT teacher?

The effects of TT can be far reaching, sometimes affecting the whole body. Lots of adults think they have no symptoms from their ties until they start learning about it. It goes waaaaay beyond speech and feeding which is what a lot of HCPs get fixated on (oh and eating ice creams )

some info here

In ds1's case, it has affected his whole orofacial structure and resulted in a high narrow palate. He is having orthodontic treatment to expand his palate so that he can avoid multiple extractions when he's a teen. When he was younger, he had ENT trouble, gastric trouble, sleep problems to name a few, all directly related to his ties.

Thanks Maw. Reading those lists, I don't think we have any of those side effects thankfully.

I love mumsnet. Thanks again!

Post (unplanned homebirth) of DS2 midwife check
MW: Yep, boy, 10 fingers, 10 toes
Me: Is he tounge tied?
MW: [hmmm] yes, why?
Me: DS1 was tt, please can you refer us for a division
MW: OK, I'll write the referal when I go back to the office to log the birth.

Compared to DS1 4 weeks of fightening til one lady saw me feed, it was a breeze. Be assertive, and keep pushing til you find someone who will listen. It is dependant on who you see!

Oh, Next - that story makes my heart sing! (Apart from the unplanned home birth ...)

Hi, couldn't get direct message to work in my phone...we used Carole Goddard on 07718 305315 - came to my house the day after I called her, examined my son and snipped him then and there. He didn't cry or seem to notice really. She stayed to help make sure he could latch on straight after. She's a qualified midwife and she cost 140 for a session. Good luck :)

Thanks Draw - I can't find her on google. Where is she based?