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kaybee
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Topic: Posterior tongue tie Posted: 10 March 2012 at 10:56pm |
Hi
I want to post about this in case it helps any other Mums who are having breastfeeding issues and aren't sure why. Sorry if it's a bit long I don't want to miss anything in case it could be important!
DS2 was born in November last year and right from the start I noticed that it was hard for him to get his mouth open wide enough to latch on properly. I thought it was just because he was 11 days early and also had a small mouth. After 2 weeks he was still 10% below birth weight and I ended up pumping and supplementing with formula to get him to a healthy weight.
I pumped exclusively for 10 weeks, taking him to see 2 different lactation consultants within that time. He was checked for tongue tie each time. After 10 weeks I was pretty stressed with juggling a toddler and constant pumping, and gave up on the idea of breastfeeding. For the past 6 weeks I have been pumping 3 times a day and giving about 1/2 to 2/3 of his food as formula.
A couple of weeks ago my cousin emailed me to tell me about a friend of hers whose baby was diagnosed with a posterior tongue tie (can also be called grade 3 or 4, submucosal or 'hidden' tongue tie). I did a lot of searching online and came to the conclusion that ds fit many of the symptoms. I took him to my GP who said there was 'absolutely nothing wrong with his tongue', but I decided to also take him back to the LC for a second opinion as she said when I rang her that she had some experience with posterior tongue ties - she also said that the GP was unlikely to be any help.
Long story short, he did have a grade 4 tongue tie and yesterday we took him to an oral surgeon in Hamilton who separated the tie, I am not sure yet if it is going to be possible to get him breastfeeding properly, but at the very least he is already a lot easier to bottlefeed as even that was a struggle! His latch was also instantly better after the procedure (before now I have never been able to get him to 'flange' his lips properly)
If you are having trouble with breastfeeding, and notice that baby has trouble latching correctly, or have a lot of pain, I would suggest looking up posterior tongue tie to rule it out as a possibility. If you think the symptoms fit, talk to someone like a lactation consultant who has had experience with it - most GPs know nothing about it and their training has taught them that if the baby can stick its tongue out past his gums then there is nothing wrong (however this only applies to grade 1 and 2 tongue tie, not grade 3 and 4 which are harder to diagnose). As well as breastfeeding it can make feeding solids difficult, and can also affect speech later on.
Now that I know what to look for it is hard to see how I missed it for so long, but it is not easy to diagnose, with grade 4 there is no obvious tie, just that the skin underneath the tongue is tight, shiny and inelastic. But once I was aware of it I started to notice that ds was always struggling with his tongue, that it never grooved properly and he couldn't stick it out past his lips.
The procedure to fix it is very quick and simple but there are very few people who will do it, the guy I saw in Hamilton is apparently the only person in the Central North Island who will do it!
If you do suspect a posterior tongue tie and want some support please pm me as I am more than happy to share my own experience and the little knowledge that I have gained about the options available. The more we can spread this knowledge the better!
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AandCsmum
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Joined: 13 May 2008
Location: Palmerston North
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Posted: 11 March 2012 at 8:05am |
Wow that is interesting!
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Kel
A = 01.02.04 & C = 16.01.09 & G = 30.03.12
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Bky
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Location: Auckland
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Posted: 11 March 2012 at 10:33am |
Thanks for giving this information! I think my DD has posterior TT but I didn't really figure it out until she was 8+ months old and no one is really willing to help me now. I'm worried about my future baby as well since I know it's hereditary. I've heard there's a laser dentist in Auckland that can do the cuts (and no stitches after as the laser cauterizes), but even so I'd be interested to get the name of the guy in Hamilton, because I'm prepared to do whatever so I don't have the nightmare breastfeeding experience I did before. (I also have a recommendation for a dentist in perth but uh, I don't really want to do that :( )I've talked to a private paediatric dentist down here and they really didn't have too much clue and since I can't get a referral (everyone told me it was my problem at first, but now DD is too old for it to matter-ugh!)I have no idea how experienced the local ENT (ear nose throat) people or oral surgeons are at the hospital.
I have some diagnosis videos and stuff if anyone is interested.
Edited by Bky
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7/2010, 10/2012 and 1/2015
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nannikin
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Location: Funkytown
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Posted: 11 March 2012 at 11:30am |
interesting stuff! i have a tongue tie, but it didn't cause any trouble with feeding when i was little. glad there is info like this out there as i am wondering if baby will have a tongue tie or not - had no idea whether or not it is hereditary. thanks for posting!
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kaybee
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Posted: 11 March 2012 at 12:12pm |
Bky - personally I would go to the guy in Hamilton, he charges $135 vs $560 for the laser dentist in Auckland. His name is Steven Evans and he has done hundreds of tongue ties, it is such a simple procedure, after having seen it done I would never pay that much for the laser.
Actually I just noticed that you are in Christchurch, there is actually a GP in Dunedin who will do it for $10! - I can find out their name if you like? The person who put me on to it discovered them when they were visiting there and that's who fixed her daughter's tie.
Also for anyone in Auckland, there is a GP in Milford who will diagnose them - Dr Michele LeFort, but she will only separate grades 1 and 2 so you would still have to go to Hamilton or the laser people for the grades 3 and 4.
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Bky
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Posted: 11 March 2012 at 1:17pm |
That would be great. I was going to wait until I got a bit more pregnant to call the Auckland guy for pricing. $135 is better than $560 (though of course $10 is better yet).
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7/2010, 10/2012 and 1/2015
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FMT
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Posted: 31 March 2012 at 8:56pm |
Hi there. Interested to see this post as we had (have!) very similar problems. My daughter was diagnosed with posterior tongue tie at 6 days and we had the laser procedure at 2 weeks (he was out of the country prior...grr). Things did not improve though and it was Yvonne Lefort in Milford who picked up that the issue had not been fully resolved. So we had to go back for a second laser procedure. There has been some improvement but I still have great difficulty getting her to latch properly. My nipples are always either creased, blanched or lipstick shaped and feeding is uncomfortable (though at least not excruciating like before). Does anyone else have experience with ongoing problems despite treatment? I am on to my 4th LC now and no one seems to be able to help. The best I seem to be able go hope for is that things will improve with time (she's 6 weeks now) but that isn't particularly reassuring.
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lmb
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Posted: 22 May 2012 at 8:59pm |
Hi there, I can't believe this post, it's amazing! Thank you! ......but please help! Am not too sure what to do, or what to think anymore! In short, We currently have our 9mnth old under a Specialist for colitis (basically stomach problems). At 5weeks old we were referred onto a Specialist because she was very fussing during feeds, and would immediately have diarrhea and vomiting after feeds and she wasn't gaining weight quick enough and even started losing it at one point. Our specialist did some tests and put DD on Pepti Junior Formula. She took a wee while to get the hang of using the bottle, but she seemed more comfortable and settled, and she seemed to take to Pepti Junior really well. Her vomiting and diarrhea stopped, so we figured everything was solved-i was guttered to not be BF her anymore, but was happy in the fact that she was SO much happier and settled. I saw my GP a few weeks back concerned that DD wasn't putting weight on quick enough again and that she seemed to be struggling with her solids, ie. gagging on food, not wanting chunky food (she just holds it in her mouth, or chokes on it), only eating mashed or puréed food and not taking anymore then 150mls at a time on a bottle. My GP told me to have a follow up appointment with our Specialist, we did, he doesn't seem worried about her at all-he didn't even physically check her out or anything. I asked if there could be anything physically inhibiting her to be able to eat chunky food or take anymore then 150mls, he said he wasn't concerned about anything......he thinks she's got immature feeding skills???? He's referred us onto ped's nutritionist to help us fatten her up, and that's it.......but there's something sitting in my gut that says he's wrong :/. A friend asked if she was tongue tied, and not knowing what it is I goggled it and found a whole lot of info about signs and symptoms and they are everything DD does / has!!!!! The clicking while on the bottle (though not anymore??), the painful and uncomfortable BF'ing (even though she looked like she was latching properly), the lipstick shaped nipple I got after feeding her, the feeling of her flicking my nipple, the pulling off the breast /bottle and gasping for air, sometimes choking on feeds, the sound of gulping during feeds, the green poo's (and stinky poo's!!), and now she's having problems with solids......she refuses chunky food during meals, she just holds the chunky bits at the front of her mouth, she'll eat a cracker, but only the ones that dIsintergrate in her mouth. She doesn't have teeth yet but the food I'm giving her is definitely "gum-able" , it's very soft and even if given to her in a chunky form I would have thought she would have been ale to "gum it" down and swallow it?? She won't hold a piece of canned peach and "gum it" but if I mash it she'll eat it??
...........sooooooooo where I need help is, I rang Yvonne LeFort, she's going on leave until next year, as of today (!!! Grr!!) so Milford put me onto some other Drs that deal with this-one of whom is at my Medical Centre, so I went to see him this avo, and he doesn't think she's got posterior tongue tie or a high palate??????
I don't feel like what the Specialist is saying is right, I honestly don't think she's got immature feeding skills, she loves food, but seems to physically struggle with it?? But the GP at my medical centre said she doesn't have a posterior tongue tie or high palate?? But she has so many of the signs I've read about........am I trying to "self-diagnose" her, should I just listen to the specialist and Dr, or should I follow my gut and go for a third opinion?? If so, does anyone know anyone I can go see, now that DR LeMont is on leave :(
Thanks!! Looking forward to hearing from everyone!!
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Paulsmum
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Posted: 22 May 2012 at 9:49pm |
keep going!!! you know what is right!!!
DS was tongue tied at birth but midwives said not to worry as he was feeding alright.. when he got a little bit bigger would tak 2 hours for him to feed... got it cut at 3 months... next time i will get it done straight away! its a lot less painful then!
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FMT
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Posted: 23 May 2012 at 9:07pm |
Hi Imb. I think it's definitely worth trusting your instinct if you still think something is wrong, especially with posterior tongue tie because it is poorly understood and woefully under recognised in this country. I posted above re having 2 laser procedures, which were largely unsuccessful. My gut told me something was still wrong so we went to see a paediatric surgeon (well 2 of them actually but the first was unhelpful). Dr Ann Kolbe was absolutely amazing and confirmed that there did still seem to be a problem. So our DD had general anaesthetic (which wasn't so bad - basically gas & air, like some women have during labour) but unfortunately Dr Kolbe was unable to do anything because it was essentially a thick band of scar tissue left from the laser procedures. We were gutted that (a) the surgery didn't result in any improvement; (b) the laser had been such a disaster after being sold that it was the perfect solution; and (c) surgery had cost a fortune for nothing!! However, the good news is that now at 14 weeks things have improved remarkably and I am now exclusively bf'ing my daughter....so time and growth did eventually fix things.
This has ended up being a bit of a ramble but my main tips are (1) trust your instincts; (2) see a paediatric surgeon if you can. They are expensive but really know their stuff. I can't recommend Ann Kolbe highly enough (Akld based).
Re the problems with food, I can't really comment with DD2 but my older daughter (now almost 4) had an undiagnosed tongue tie and we had a horrendous time trying to bf but no probs with food. We did baby-led weaning though, so not sure if that helped. Possibly worth a try??
Best of luck. My heart goes out to you as I know how difficult all this stuff can be. x
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Elaine112242
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Posted: 02 April 2013 at 8:42pm |
Hi there i had the exact same problem with my son his posterior tie wasn't piked up till he was four months all the docs thort i was crazy!! Any way i am pregnant again and so scared this baby will b the same so i would love to know wea and who did ur childs?? Do u know thea contact details? Thanks xxx
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Thao117094
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Posted: 20 May 2013 at 9:02pm |
Hi there. I have a 7 week old baby girl who's just been diagnosed with posterior type 4 TT. We have been having a lot of trouble breastfeeding...sore compressed, cracked and bleeding nipples. It has improved and now it hardly hurts when she latches. However it takes her ages to feed, a lot of this is due to my low supply, but also I've been told with this type of TT the baby struggles to fully drain the breast which obviously adds to feeding time as she's never completely full. I have been pumping after every feed and giving her that too. The baby pokes her tongue put past her lips and to be honest her tongue looks normal so I am a bit torn about getting her lasered. I would hate to resort to surgery unnecessarily as I'm worried that it may go wrong and cause more problems for her. It seems like a lot of tissue to cut through. Do you know if there are long lasting issues if we don't do anything?
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Amt30
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Posted: 26 June 2013 at 8:43pm |
Hi there I have a 5 month old baby, and today the lactation consultant diagnosed tongue tie and a lip tie. Like all of you, it seems the tongue tie is not the most obvious - he can stick his tongue out. The LC has recommended laser treatment by a dentist in Christchurch who apparently charges $380. But from reading some of your posts, I'm considering going to a paediatric surgeon instead. Does anyone know of one in Christchurch? To be honest it's such a relief to hear that everyone else has had similar issues, and that this is the reason. I thought i just had a very hungry baby ! (I do, he never gets the good milk). I was considering not doing anything about it since he is almost onto solids, but from the posts above it sounds like that is not a good idea - as it seems you have had issues with solids and the tongue tie. Is that right? Any feedback would be welcome.
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Andie-B
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Posted: 15 July 2013 at 1:33pm |
Hi there My wee girl has to been diagnosed with posterior tt and upper lip tie when plunket picked up a plateau in her weight and noise when she feeds and after a few weeks of debating it we are getting it lasered this friday as our feeding is getting worse and worse. In chch for $380. I was referred by Vicki and then spoke with a Ruth the other lc who explained it alot better for me, a plunket lady, my Dr and my midwife then made the decision ourselves. She is just gone 3 months and has started crying at my breast unless she is really hungry. Frustrating for me and her obviously as she knows theres more milk there but its hard work for her to get it.
Decided since there minimal risk and could affect speech in future and solids, its best if we just do it now rather than later i guess. Shes not going to remember it-thats just what i keep telling myself as im worried it'll hurt her. She's currently a really good night sleeper so must get what she needs but Ruth said it could impact on her sleep and when she starts reaching new milestones in the coming months if shes not getting enough....Oh and she WONT take a bottle so i cant top her up. She flat out refuses. BUT we think it might actually be related to the tt since she gags alot....She's a bit of a nipple feeder, I'm really lucky i haven't had any pain but its been the last 2 weeks feeding seems to be getting harder and harder so I'm really hoping for some good results out of this! A friend had her boy done in dunedin for $10- but that was just snipped which they can't do for posterior so i'm told, thats where the laser comes in... She said it helped her out a lot though and he baby was no longer as 'windy' which we seem to get a bit of wind too.
Will let you know how we get on if you like?
Edited by Andie-B - 15 July 2013 at 2:00pm
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Ali5656
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Posted: 27 July 2013 at 11:01pm |
Hi there Thank you to everyone who has posted here. I have very similar issues to you all. My wee man (5 weeks now) appeared to feed really well from day one (as the midwives, nurses & lactation consultants kept telling me), however, he was not getting any milk, well very little. He feed an hour plus on each side and never seemed full. My nipples come out flat no matter how perfect his latch seemed. my nipples also become extremely damaged to the point my husband had to pull blood clots out of the nipples because I couldn't bare to look! After some varying opinions we were referred to a paediatric specialist and he had his tongue sniped for a tongue tie on day 5, however, this appeared to make no difference from what I could tell. Although it did loosen the tongue to some degree. I still felt something was wrong the whole time but everyone kept telling me, that's just babies and it will get easier or that is normal. Day 7 he become very dehydrated and I called my back up LMC late one night. She came and assed him however, she thought he appeared healthy enough, but suggested i express and top him up as he was still continuing to loose weight from birth which was a major concern. So i followed her instructions and i was positive this was the turning point and things were looking up. Two day later he continuing to lose weight and we were admitted to the SCBU back at the hospital. The nurses were fantastic and helped me every way they knew how to improve the feeding but nothing seemed to work. By this point it was also apparent there was a supply issue (because obviously he was hardly feeding from me) so the nurses focused on helping me increase my supply. This was probably the lowest point. I felt like I could not provide for my baby and the emotional and physical sides were starting to get to me. Breastfeeding and expressing every two hrs seemed like an endless painful cycle. So day 3 in hospital we all decided it would be best to stop breast feeding and express only until my nipples healed and we could try the breast again later. Luckily my supply improved so that made me relax a bit more. My nipples took two weeks to heal and I tried the breast again, however, it was just the same, all appeared ok, but the nipple comes out flat & only four feed over 4 days and the damage is already starting. And there doesn't appear to me much transfer of milk just like before!. The LC came to see us today and suggested it could be a PTT. He also has a super strong stuck which i read is another sign of a PTT. I am kicking myself for no looking into this further as I did come across this post a couple of weeks ago. We are in Nelson and there are no further specialists here to help/diagnose. Wellington would be the next best option, however, would also consider travelling to Auckland, so if you one can recommend someone help us get a diagnoses and/or treatment for a PTT it would be much appreciated. Ali
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ginger22
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Posted: 28 July 2013 at 10:40am |
Wow Ali, what a lot you have been through! I can't help with diagnosis, but we just had our 5 month old's lip and grade 4 tongue tie lasered in Hamilton - Old Villa Dental. We did ok breast feeding, but bottle feeding was horrendous with lots of clicking, poor seal around the teat (many different types tried) and jaw tremor. We ended up having to shift fully to bottle as babe would just scream for the breast, but for me to work, babe had to accept the bottle. Long story short, it may be too late for babe to learn how to such properly, but hopefully it will prevent any speech issues, as well as dental issues (lip tie). I would HIGHLY recommend Old Villa. You may even be able to contact them and see if they have someone who can diagnose?? Feel free to private message :)
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Ali5656
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Posted: 06 August 2013 at 10:44pm |
Thanks Peppermint87. Its comforting to hear people going through similar issues, not that I wish this on any mother & bub. We took our we man to the Laser Life Institute in Auckland last week and they released his tongue and upper lip. My husband was in the room while they preferred the procedure - its sounded horrible but quick and no need for aesthetic. I have now been breast feeding with a little EBM by bottle and things are improving everyday. I definitely think the surgery was needed and without would have no hope in breastfeeding. Its a shame this issue is not more widely understood and acknowledged by professional this area. Our GP referred us to a paediatric specialist locally and her referral was refused as it was not deemed to be important! So glad we got the help we need.
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Jules99590
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Posted: 11 November 2013 at 10:12pm |
Hi mamas! I jaut came across this forum. I a one of the admins for the NZ TT Facebook group. Please please please can you all consider emailing your story of TT hell and the effort you have gone to to get a diagnosis for your banyan d all the hassles of health professionals fobbing you off to MyTTstory@gmail.com. We are hopingto gather women's stories to lobby the government for TT and lip tie funding for treatment, and for the better education of health professionals...midwives, plunket nurses, GP, paediatricians etc. Please spread the word to anyone else you know who's child is tongue tied or has a lip tie. THANK YOU. The NZ Tongue Tie support group page is https://www.facebook.com/NewZealandTongueTieSupportGroupResources?ref=hl
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Andie-B
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Posted: 15 November 2013 at 7:41pm |
Absolutely will try this weekend Andrea
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superkat3
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Posted: 10 July 2014 at 2:44pm |
My son was assessed by a hospital lactation consultant due to my very damaged nipples, they said he definitely didn't have a TT. We had a second opinion at a community breastfeeding support place when my babe was 4 weeks due to ongoing cracks, blisters etc on my nipples and she said she thought he had a posterior tie! So 2 days later (today) I have had it snipped by a GP in Dunedin for $10. Yay, hope it makes a difference!
Edited by superkat79 - 10 July 2014 at 2:46pm
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