Tongue Tie delayed treatment? share your experiences

[ChaffinchOfDoom]

The tongue tie waiting times are very long
according to this

and effectively halt breast feeding for many women
My mum says that in 'ye olde days' they snipped a tongue tie immediately after birth as a matter of course

so why did that change? With my ds3 I had to wait 6 days and breast feeding was torturous, and only then it was done because I pestered them. Only one MW in my hospital was able to do the procedure.
If it had been done straight after birth it would've been far better for him and me.

anyone else want to share?

[McFox]

Thanks standingonlego - the clinic that my DS has his appointment in August with is on that list, so we're just keeping our fingers crossed that they will pull it forward.

[standingonlego]

mousey Dr Griffiths is wonderful - you are in expert hands. It is only a couple of weeks away - however ring them every day and seek a cancellation or last minute slot. It is worth a whirl (and maybe a little cry whilst on the phone). We travelled 300 miles round in the day, it was worth it. Well done with the EBF too - amazing, be proud of yourself and DD.

McFox glad they are on the magic list. When i went 7 years ago there were only 3 hospitals on that list so things are definitely improving. Same advice to you as Mousey. Daily polite enquiry, just in case a slot comes up

Quoting from my NHS battle hardened DM "squeaky wheels get the grease". Be polite, cheery but tenacious so you are front of queue if something does come up last minute.

[standingonlego]

Oh....and ask about private if that is an viable financial option. It sometimes does make things go faster as sometimes the sessions run separately to the NHS clinic so alternative slots. I faffed around getting DS onto my work health insurance and then found it was only £150 which was WAY less than I was expecting - as it is such a quick procedure and no drugs at all involved. That was 7 years ago so prob gone up a bit but still might be worth asking the question if it saves some time and heartache.

[TongueTiesUK]

ChaffinchOfDoom
Thumbwitch

and others, hi :) we are parents of kids with TTs and started our organisation Tongue-Tie UK a few months ago and are campaigning on raising awareness of tongue and lip ties, help improving care and outcomes, and also we hope, getting proper and well designed research commissioned to help NICE and the NHS shift things. :)

We read the rules about posting. We're not offering commercial services etc. so hope you won't remove this post. We did ask Mumsnet on Twitter earlier which board we could post on, but haven't heard back. It's not "local" as such as concerns everywhere.

We are still gathering stories and we post these every week on our website: tonguetieuk.org and on Facebook: www.facebook.com/tonguetieuk so as to highlight the difficulties we face to a more general audience, and as part of our campaigns.

It's early days and all of us are still volunteering at Tongue-Tie UK, and have several other hats too. For example, I am one of a team of admins on the international Tongue Tie Babies Support group www.facebook.com/groups/tonguetiebabies/ another of us helps admin the UK group: www.facebook.com/groups/tonguetie

We were privileged to meet Luciana Berger MP last week at the HOCs at an event, and shared some of what we do, and this was just prior to the publication of the Observer article on waiting times for tongue-tie patients, which came about as a direct result of her FOI request and have been in touch with her office since.

Today we launched #TongueTieHour which will run (we hope) every Monday from 3pm (BST). Our Twitter handle is @tonguetiesuk in case you want to visit us too.

We want to hear peoples' stories and experience of #TongueTie there too, this week and will then choose the next topics of discussion from suggestions, or dependant on guests after that.

Please help us spread the word, and maybe achieve lasting change on the provision of services for Tongue-Tie and Lip-Tie. We'll be rolling out several other things over the next few months, and if you want to keep up to date with us, just follow our Facebook page or Twitter. :) Thanks for reading this!

[Thumbwitch]

Thanks for that link, will join the FB pages. :)

Keep up the good work - this needs to be made much more of if the Govt/NHS are truly committed to increasing breastfeeding.

[ChaffinchOfDoom]

yes I'm following the FB pages too. I'm glad to see work is being done with TT because it is hugely frustrating to know it's a simple fix to such huge and debilitating problems

[Mouseymum]

Thanks standingonlego - good advice :-)

[TongueTiesUK]

Hi Mumsnetters, we are chatting #tonguetie right now on #TongueTieHour on Twitter. Would love to hear your stories or opinions over there. Come join us! Thanks - A

[ChaffinchOfDoom]

thanks, will have a look

[TongueTiesUK]

That was at 3pm ChaffinchOfDoom :D see you next time maybe! :)

[TongueTiesUK]

Don't forget to join us later today Mon 28 July to chat about your experience of #tonguetie on #TongueTieHour on Twitter at 3pm, we'd love to hear from you.

[Thumbwitch]

Just been to check my emails and found one from RowanMN that says something along the lines of they have their hands a bit full with other MN campaigns at the moment but they will keep thinking of ways in which they could do something effective in this area.
Fingers crossed! :)

It just makes zero sense to ignore it when it's so simple to fix...

[TongueTiesUK]

We'd love to hear from them, as we've been helping out on large support forums (20k members put together) for the past few years supporting parents through this too and are parents of kids with ties. Thanks for the update Thumbwitch :)

Maybe we could work together. We'd love the support RowanMN! :)

[Thumbwitch]

That's great, TongueTiesUK! I'll report one of these posts to bring yours to their attention - hopefully they might be in touch and you can find a way to work together that would be beneficial to everyone! :)

[TongueTiesUK]

Come join us on Twitter right now for ?#?TongueTieHour 3-4pm? ! Chatting about all stuff tongue tie related...

[Mouseymum]

Just an update - Dd's tie has now been cut for the 3rd time but no improvement nearly a week later. Have been doing the recommended exercises. Gutted.

[TongueTiesUK]

Wow. Really sorry to hear that Mouseymum. What age was the first intervention? Am sending a PM BTW

[TongueTiesUK]

Come and join us for #tonguetiehour on Twitter right now. Just a space for parents (and anyone else interested) to come and talk about tongue-tie. See you there (mon 3-4 pm) If you post remember to include #tonguetiehour or tweet us @tonguetiesuk

[SASASI]

J's was diagnosed straight away as he was totally tongue tied.
I hand expressed in hospital & he was given formula top ups in a cup.
When I got home he was formula & expressed breastmilk feed until my milk came in day 5 & was exclusiveky expressed breadtmilk feed.
TT cut at 10days privately @ £150 doctor took 2 goes the TT was so bad.
Now he is mostly breastfeed with nipple shields although he gets very frustrated at having to wait for the milk so usually gets a bit of expressed in a bottle to appease him enough to latch on.
It's stressful & so very time consuming feeding & expressing. He is now 24 days & while we are both still learning it would have been so much smoother & easier if it had of been sniped before we were discharged but red tape prevented that.

[TongueTiesUK]

Sasasi, sorry to hear all you've been through :-( and well done for being such a powerful advocate for you child and doing so much! It's often because a HCP isn 't revising correctly or far enough that you have to go back. With the competent laser practitioners for the UK listed on the links given on ttbsg.weebly.com they will usually not charge to revisit a site IME. Were you able to access some pediatric osteopathy or similar as that can help enhance results. Are you working with a competent BF specialist? Ideally an IBCLC :)
come and post on the Tongue Tie Babies Support Group if you like :) facebook.com/tonguetiebabies lots of support there too! :D

[SASASI]

Sorry for the typos - carpal tunnel!
The doc did it twice at the one visit thankfully.
I'm not on Facebook (one of the few!) I have had lots if support from midwives etc, extra visits & will go to breastfeeding support group when I can drive again (c-section).
I must look into pediatric osteopathy in NI.