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?

[standingonlego]

For those of you with TT Toddlers - still do it, give them a chance to catch up before school. It may be scary, but it will only get harder. Find the right people to help - some great links on this thread. x

That video upthread is really powerful.

[McFox]

Thanks Process.

And many thanks Katherine - I'm in Scotland and there don't seem to be the same private options up here, but I'll see if the fb group can help.

[westcountrywoman]

No one would talk to me about snipping my DDs tongue tie. They agreed she had it, but wouldn't do anything unless it affected her speech at 2 yrs plus. I'm still bitter about it now (she's 4 - and speaks very clearly) because of the breastfeeding agony we went through. Wish I'd pushed more for a referral but she was my 1st and I was a bit clueless.

[sconequeen]

We had 5 days of feeding hell with DS when he lost 12% of his body weight and screamed almost constantly. I knew something was wrong but midwife after midwife told me that the latch was fine. I was also told that he would have to go on to formula as I wouldn't be getting to take him home till he had regained his birthweight - this was achieved by staff forcing x fl oz - can't remember quantities now - of formula down him every three hours, a difficult task as most of it was spilling out his mouth. I started off insisting on cup-feeding as I wanted to get b/f established but as most of the milk ended up on his clothes, we had to move on to a bottle after a day to get any reasonable amount of milk into him.

When a paed registrar was finally brought in on Day 5 to have a look at him due to the weight gain problems, he diagnosed a 100% tongue-tie straight off. We only had to wait a few days for it to be snipped, which took seconds - DS didn't as much as flinch. He was a changed baby immediately although unfortunately not up for b/f despite my ongoing efforts (and support from the infant feeding adviser) as he had already decided he preferred a bottle. I struggled to express for 3 months to make sure he got some bm and had repeated bouts of mastitis, involving trips to OOH doctors and antibiotics, which were most probably caused by expressing.

I am now pretty sure that DD (born before DS) was also tongue-tied. She was two months premature and I spent 5 miserable weeks on SCBU trying unsuccessfully to get b/f established before having to move on to ff as I was told (by the unit's b/f adviser no less) that I wouldn't be getting her home otherwise. At home, we had months of struggling even to get bottle feeds down her as so much spilled out of her mouth each time. I spent six months expressing, with a supply that never really established, to try to give her at least some of the benefits of bm, all the time stricken with guilt that I was failing to ebf, having already failed to carry her to full term. (I don't feel guilty about either now, but it has taken a long time to shake off the feelings of failure.)

On both occasions, the hospital we were at held baby-friendly status. We were lucky that DS was referred, had the tongue-tie snipped quickly, and that there was support from the specialist midwife but, unfortunately, the chance to establish b/f was ruined before the tongue tie was diagnosed and snipped.

It annoys me so much that so many HCPs cannot diagnose this simple problem, and that b/f is stymied for so many babies because of it. It is upsetting for the mums and babies, means that babies are missing out on the benefits of ebf, and that mums who want to b/f are being denied the chance to do so. An early diagnosis for my two would also have saved the NHS money in terms of the extra days spent in hospital due to feeding problems, and the costs of treating the mastitis which was probably a knock-on consequence of the tongue-ties.

I would love to see a high-profile campaign started to address this issue.

[CustardOmlet]

DS is 19m, as a new born I was told there was no tongue tie so I took that one MW diagnosis as fact. We struggled with many on the symptoms the OP mentioned up thread linked to breast feeding, and gave up BF all together at 10wks. A couple of months ago I had given my son an ice cream, and noticed he wasn't licking the mess off his lips and there was a dimple in the middle of his tongue when he tried to stick it out. Iv not seen a professional about it yet, but will definitely ask the dentist.

[ChaffinchOfDoom]

thanks for sharing on the thread, people. some heartbreaking stuff here. scbu not checking for TT to help with bf sounds bonkers


and those doctors who would rather the dc get speech therapy rather than a snip? WTAF???

[RumAppleGinger]

Hi McFox, I'm also in Scotland. My DS's TT was snipped at a local dental practice. Obviously I don't know if we are in the same area but the practice was Linburn Dental Practice in Dunfermline. Perhaps you could give them a call? They might be able to suggest other dental practices closer to you who are able to do it? My DS had his done when he was about a week old and it didn't cost us anything.

[McFox]

Thanks Rum, that's really helpful, I'll check with my local practice in Edinburgh and give yours a call if I have luck there. Thanks very much.

[ChaffinchOfDoom]

folic acid? also wonder if there's any link with cleft palate?

just musing here, but if it is accepted that it is genetic, maybe it should be raised on the pregnancy notes - did you/anyone in your family have tongue tie ? to flag it up from the very beginning

[ChaffinchOfDoom]

it's great that dentists can treat it - but again it is all shrouded in mystery and kept secret

very confusing for anyone needing help

NCT?
La Leche?
HV?
MW?
paeds?
dentist?
other?

[HumphreyCobbler]

there is a theory that some people (up to 10%) have a genetic make up that renders them unable to assimilate folic acid in the tablet form you are given, which could lead to midline defects such as ULT, TT and some issues with foreskins in boy babies. My DS has all of these issues, my older ds also. I was wondering about testing.

www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=2&cad=rja&uact=8&ved=0CCsQFjAB&url=http%3A%2F%2Fsunnygypsysoul.wordpress.com%2F2013%2F08%2F02%2Fgetting-the-word-out-tongue-tie-and-the-mthfr-gene%2F&ei=vkHGU9_WM6mq0QWkqIGgAw&usg=AFQjCNHuaMr6_hm4Zep6DaMTggecwCdJbA&sig2=TKlSr21YXCWL73JMZrKI5Q&bvm=bv.71126742,d.d2k

[Thumbwitch]

humphrey - I have to admit, I'm a touch worried about both my boys having problems with their foreskins as well but it's too early to really tell (they're 6 and 21mo). DH was circumcised at birth so no good asking him!

[minipie]

scbu not checking for TT to help with bf sounds bonkers

Not only did SCBU not check DD for tongue tie, they (well one nurse) actually told me she did NOT have TT as could stick her tongue out. Which meant that when MN posters, and HV, later suggested TT, I dismissed it because the hospital had said no TT .

[minipie]

Humphrey Thanks for the info about folic acid and the genetic issue. DD has tongue tie and sacral dimple. I am TTC DC number 2 at the moment and will switch to vitamins with methylfolate instead of folic acid. Thank you.

[HumphreyCobbler]

glad it is helpful information minipie. my oldest ds has a sacral dimple and I suspect PTT too. If I had been less sleep deprived I would have thought to mention it when I first posted on this thread!

[Thumbwitch]

Sacral dimple too? Yep, DS2 has a really deep one! DS1 less so. But I have one too, and I didn't have tongue tie or lip tie or anything, so I didn't associate it.

[CityDweller]

Minipie and Humphrey where did you read about switching to a different supplement? And also about the connection between TT and foreskin problems (I couldn't find that info in the link Humphrey posted)?

[minipie]

It wasn't on that link - I can't remember what I googled but it's all about the MTHFR gene which makes some people unable to absorb folic acid (but they can absorb methylfolate ok which is a different form of folate).

The connection between TT and foreskin issues is because they are both "midline defects" (along with sacral dimple, cleft lip/palate and at the more severe end spina bifida). These are linked to folate deficiency. We are advised to take folic acid to avoid these issues, or more specifically to avoid spina bifida. However it may be that for people who can't absorb folic acid, taking folic acid doesn't actually give protection. So these people should take methylfolate instead (or get their folate from food eg liver and pulses but that's quite hard to do).

[ChaffinchOfDoom]

I love MN for the sharing of information

also the raising of concerns; if folic acid is linked, again this could be discussed on the pregnancy notes right at the very start of pregnancy if any cases of TT in the family,
but still think all MW should be able to accurately diagnose a TT and snip it as part of their job ; not make it this weird time consuming referral business and separate clinic bollocks

[bronya]

There is a lovely ex MW near us who does this privately. Costs about £100 and she'll fit you in within the week (or do a home visit within a couple of days if you're desperate!). There's also a clinic who do it with laser if necessary, for not a lot more, with a doctor. We took whoever could do it faster with DS as was a straightforward tie, just a membrane with no fleshy bits that could re-attach. I will be checking the next baby when they hand her to me, and if she's tied, will phone up to book while still in hospital. I don't ever want to go through that much hell again!

It's not cost effective for the NHS either. A few mins with scissors vs weeks of MW visits as baby doesn't gain enough weight - we were almost referred to a pediatrician before I read about TT on here, got the MW to check and got it snipped. Once snipped, he gained weight beautifully and was soon off their books!

[McFox]

I've been to see my GP this afternoon who agreed that 5 weeks is too long to wait for DS's tt to be cut. She's going to contact the hospital and ask for the appointment to be brought forward as a priority, and I have an appointment with the hv tomorrow so that they can weigh and check him over in the meantime. She couldn't help me on anyone local who could deal with it any faster, so this is our best option at the moment.

Oh and she upfront told me that she knows nothing about tongue ties - I educated her...

[Gamonsharon]

m.facebook.com/groups/349755041827453?view=permalink&id=471642702972019

[standingonlego]

Well done McFox - check my link upthread as that site has a list of all places that do it. There may be many more as others have indicated. Just call them, and jump in the car :)

[Mouseymum]

My dd and I were in hospital 3 nights simply because we couldn't get a good latch. No-one mentioned tongue tie. Dd lost over 10 percent of body weight and I felt so guilty for starving my child! A week later, a health care assistant who watched us breastfeeding thought dd might have a tie - the HCA had one herself. GP reckoned TT is impossible to diagnose before 6 weeks so I contacted the bf clinic at our local hospital, who diagnosed TT.
Dd is now 12 weeks old, and has had her tie cut twice on the NHS, but it is still there. The second time it was cut, the doctor apologised for the first cut, blaming the fact that her scissors were blunt!!!
We are now awaiting a referral to Dr Griffiths (mentioned up thread) as our Dr refuses to cut the tie again, and the laser clinic that was running, now isn't. He is at least 100 miles away from us though, and I doubt we'll be seen before dd is 4 months old. Amazingly, we're still ebf thanks to good support from our infant feeding specialist.
This has damaged my experience of my dd's first three months so much...seeing her constantly frustrated and upset at trying to feed from me is heartbreaking.