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Breastfeeding Challenges > Tongue and Lip Tie FAQ
Lady Lilya's Avatar Lady Lilya 12:09 AM 05-30-2009
Dr Coryllos charged us $150 for a tongue tie and lip tie. We didn't end up submitting it to our insurance. Things were so hectic in that newborn phase, and then we ended up moving. I was wiped out. I wonder if the insurance would have paid it easily or put up a fight.

In answer to Lynn's question
Rosti was a frequent nurser. Even after his tongue tie was clipped, in the newborn stage he nursed very often. I don't know how much of that was due to residual sucking difficult left over from the tongue tie, and how much was just typical high needs stuff.

myfairbabies's Avatar myfairbabies 01:23 PM 07-07-2009
Dr. Wade Peers
801-530-0027
508 east south temple suite 114
Salt Lake City, UT

He performed the clipping on my 2 1/2 week dd with a type 4 (posterior) tt. He was hesitant since he'd never done such a young baby, but he was great and the difference has been amazing! Goodbye syringes!
maryjane's Avatar maryjane 01:57 PM 07-28-2009
This thread has been a G-d-send. I spent a few hours last night reading through it. I have a call into Dr. Palmer's office (he retired a few years ago, but the receptionist who answered the phone was super helpful and is checking with him for a referral).

Between thrush and her terrible lip and tongue tie, nursing is almost always painful. I look forward to updating with some good news soon!
lastrid's Avatar lastrid 03:42 PM 05-12-2010
Does anyone have a current number for Dr. Coryllos? I'm heading up to NY next week and wanted to try to schedule something while I was in the area.
jenfl's Avatar jenfl 06:12 PM 05-12-2010
In Central Florida, I recommend:
Dr. Kosko of CENTA
Dr. Ruiz of Central Florida Oral and Maxillofacial Surgery

I'd been to two oral motor therapists and another ENT, none of which saw my son's tie. Dr. Kosko actually took the time to really LOOK (papoosed him to the board, used a light and microscope as opposed to half-heartedly poking in his mouth with a tongue depressor) and found a small, tight tie in an odd place. He was hesitant to clip it, but did so when I said that breastfeeding was important to us. He said they do about one clip a week.

HOWEVER -- Dr. Kosko did not see the remaining posterior tongue tie, even in the follow-up appointment.

We saw Dr. Ruiz a few months later, and he saw the posterior tie. However, he won't clip in-office past 3 months. He works closely with speech and occupational therapists at Arnold Palmer Children's Hospital (they have a great therapist for breastfeeding issues, Keri, I believe).

I do NOT recommend Dr. Mokris of the Florida Otolaryngology Group. He said he didn't believe in posterior tongue tie, rarely even clipped anterior ties, and suggested I use a bottle.
GoGoGirl's Avatar GoGoGirl 01:17 AM 05-13-2010
Lastrid, I heard from my LLL leader that Dr. Coryllos recently stopped practicing.

I saw an ENT in NYC, Dr. Linda Dahl, to get my daughter's posterior tongue tie clipped. My LLL leader is recommending her to all moms with babies who need their tongue ties clipped. I really liked her--she knows about posterior tongue tie, respected me as the expert of my baby, and was gentle during the procedure.

Here's her contact info:
Linda D. Dahl, MD

186 East 76th Street
New York, NY 10021

(212) 920-3047
organicpapayamama's Avatar organicpapayamama 03:59 PM 05-22-2010
So I had dd just over two weeks ago. Shortly after I got home from
the hospital I noticed her lip tie:

http://www.flickr.com/photos/42060700@N08/4629841528/

I was having trouble with her latching and staying on the breast an ha planned to get her clipped. I made the appointment and went but wouldn't you know it the dr was on vacation and someone made the mistake of still booking the appointment. So I was sent home with nothin done. I have been able to finally get her latched on and we are feeding great. But my concern is that I've read about lip ties connected to speech problems and dental problems. That's what really worries me. I wasn't able to breast feed ds due to a bad latch and then nipple confusion. Out of curiousity I took a look at ds who is now 2 and I find he has the same lip tie! I guess it shouldn't be a surprise because it's genetic but I know more now than I did then. Ds doesn't have any speech problems, though he is just starting to talk, and his teeth are straight without gaps. I'm wondering if I'll luck out this time with dd and not have it cause any issues. So it comes down to clip or not? It's not urgent since we are bfing ok but I want to take care of this or make a decision before her teeth start coming in. Ds's teeth came in early and dd is showing signs that she will be the same. Any advice?
Lady Lilya's Avatar Lady Lilya 02:19 PM 05-24-2010
If it makes you feel any better, tongue and lip ties run in my family, yet none of us have any speech problems.

But I do think i would have been better off if my tongue tie had been clipped when I was a baby. I think my mouth and jaw and sinuses would have developed closer to how they were meant to. ("meant to" meaning how my DNA blueprints intended for them to be)
loraxc's Avatar loraxc 12:38 PM 05-26-2010
I have two kids with tongue and lip ties (DS's tongue was clipped, DD's was not) and neither has any speech issues.
jenfl's Avatar jenfl 01:41 PM 08-29-2010
Our story and links to resources in the central Florida/Orlando region:

http://floridatonguetie.blogspot.com/
sattygirl99's Avatar sattygirl99 07:31 PM 10-15-2010
A bit of an old post... but has anyone found anyone in the MD/VA/PA area that is knowledable in posterior ties? I saw Dr. C in NY for DD's however she's no longer practicing. DS2's tongue has been clipped TWICE now and still is not free. He's 3 weeks old, my supply is compromised (which I know I can fix) and nursing is so painful between the thrush and the shallow latch, inability to maintain latch and the nipple flicking with his tongue. We're supplementing right now but I do NOT want to wait as long as I did with DD to get this fixed... As it is, I have to learn to love my pump again to get my supply up to normal so when we do get it taken care of, my supply is there.

help?
Julybug's Avatar Julybug 08:51 PM 10-19-2010
Dr. Coryllos is retired. I e-mailed with Catherine Genna about my 15-month-old son, and she agreed that his pics definitely show a lip tie, and a possible posterior tongue tie. She suggested we go to Dr. Linda Dahl in NYC. She said he definitely does have a posterior tongue tie, in addition to the lip tie. I really like her and would like to go with her, but we have no insurance coverage in NY state. My husband wants us to try to find an option in NJ or PA, where we do have coverage (well, at least some coverage). I tried to explain to him that not that many doctors know posterior tongue tie, much less have real experience with it. We're gone 15 *(#*! months without satisfactory explanations for all our nursing issues, and I want to JUST TAKE CARE OF IT ALREADY with someone who knows her stuff, and not waste time with people who don't know posterior tongue tie.

According to Dr. Dahl, there really aren't many (I would think she's mainly thinking of ENTs) who deal with posterior tongue tie, especially in toddlers. Does anyone know of a truly good doctor who knows posterior tongue ties in PA, especially in the Philadelphia area? If there isn't anyone, we will have a better shot at getting the insurance to cover this as in-network. But we need to know for sure that there isn't anyone else qualified so we can fight with them about it (as we'll inevitably have to).

So - PA tongue-tie experts, especially for toddlers?
ShwarmaQueen's Avatar ShwarmaQueen 09:02 PM 10-19-2010
Quote:
Originally Posted by Julybug View Post
Dr. Coryllos is retired. I e-mailed with Catherine Genna about my 15-month-old son, and she agreed that his pics definitely show a lip tie, and a possible posterior tongue tie. She suggested we go to Dr. Linda Dahl in NYC. She said he definitely does have a posterior tongue tie, in addition to the lip tie. I really like her and would like to go with her, but we have no insurance coverage in NY state. My husband wants us to try to find an option in NJ or PA, where we do have coverage (well, at least some coverage). I tried to explain to him that not that many doctors know posterior tongue tie, much less have real experience with it. We're gone 15 *(#*! months without satisfactory explanations for all our nursing issues, and I want to JUST TAKE CARE OF IT ALREADY with someone who knows her stuff, and not waste time with people who don't know posterior tongue tie.

According to Dr. Dahl, there really aren't many (I would think she's mainly thinking of ENTs) who deal with posterior tongue tie, especially in toddlers. Does anyone know of a truly good doctor who knows posterior tongue ties in PA, especially in the Philadelphia area? If there isn't anyone, we will have a better shot at getting the insurance to cover this as in-network. But we need to know for sure that there isn't anyone else qualified so we can fight with them about it (as we'll inevitably have to).

So - PA tongue-tie experts, especially for toddlers?
Have you checked around with your local MWs?? Many MWs do frenectomies- such a quick, easy procedure (I hate to call it that even, it's seriously so tiny). The being held down is the hardest part, the actual clip is nearly painless. It's around $75 for a MW to do it here in Houston.

We had a consult with a pediatric dentist who does lip tie clips but it is much more painful according to him, so we only did the tongue since that helped DS nurse better immediately and he began gaining weight. He also said they require anesthesia for that.
Lady Lilya's Avatar Lady Lilya 10:17 PM 10-19-2010
Shwarma, not posterior ones. There are only a handful of people in the country who will touch a type 3 or 4.

Julybug, Dr Coryllos charged us a flat $150 rather than bill to insurance. I probably could have submitted for reimbursement, but at that point we were so overwhelmed that I never bothered. Anyway, ask Dr Dahl how much it will cost. You might find that it is not much at all.
ShwarmaQueen's Avatar ShwarmaQueen 11:19 PM 10-19-2010
Quote:
Originally Posted by Lady Lilya View Post
Shwarma, not posterior ones. There are only a handful of people in the country who will touch a type 3 or 4.
Hmmm or maybe it's a regional thing? I had a breastfeeding educator catch DSs posterior tie and then give me two local choices (a pediatric dentist or an ENT) to do the procedure. Both of those providers are well known to be supportive of BFing and so maybe you could ask around at the LLL or LCs in the area? Houston is a medical meca so to speak so maybe that's what it is.
sattygirl99's Avatar sattygirl99 11:29 PM 10-19-2010
Do you have coverage in MD? If so, I can send you info on someone here who does posteriors in toddlers... He did my sons when he was 3...

It took 3 separate visits to get my sons tongue tie fully clipped.... But it looks like it's finally done right and he's having all the signs of a free tongue... including it rolling lik ehe's going to swallow it and tons of drool. I'm hoping it's done right now!
vegankelly's Avatar vegankelly 11:34 PM 10-30-2010
Dr. Kotlow in Albany, NY (http://www.kiddsteeth.com/) did The Babe's tongue tie and upper lip tie at 5 days old. We were very lucky to have our homebirth MW diagnose the tt when The Babe was about 5 minutes old, and confirmed by Dr. Mike Morin 1 day later at her first ped visit.

Dr. Kotlow did not take our insurance, so it cost $450. This was a flat fee for the LASER surgery, all follow up visits, and any repeat procedures. He said her lip was the worst he had seen and the tongue tie was also very bad. She had to have both procedures repeated -- this is unusual for him. With each procedure there was a marked improvement in nursing.

This was THE BEST $450 I have EVER spent. I would be exclusively pumping now (and maybe divorced!) if she did not have the tt corrected. *The only negative thing about Dr. Kotlow, is that he said it wouldn't be the end of the world to give her some formula. At the same time we were going through our tt situation, his granddaughter was born with tt, he corrected it, so she was able to BF, but she was also supplemented with formula. He used this story to let me know it was "ok," in addition to point blank suggesting that I give her a few ounces of formula a day. Maybe it would have worked to supplement with formula, but that is a dangerous path to start down, especially since I was struggling to keep supply up with exclusive pumping. I was also POed at the subtle and not so subtle pro-supplementing advice I was getting.*

Dealing with a tongue tie is extremely difficult. Before the surgery I winced every time The Babe got near me because nursing was so so so painful. I also feel like I missed out on some initial bonding because when she was hungry I would have to sit there and pump while someone else held a screaming baby. (I could never get ahead in milk supply no matter how much I pumped.) It was devastating to have a crying baby, who you know is hungry, and not be able to take care of her -- instead I was hooked up to the pump. If I didn't have a lot of family help I don't know how we would have made it.

Thank you knowledgeable MWs and peds! And thank you Dr. Kotlow!
mamma2j's Avatar mamma2j 04:56 PM 10-31-2010
hi! I had emailed Catherine Genna (IBCLC who worked w/ dr. coryllos), she referred me to this website...there are 2 philly doc there! Good luck! I think we are going to try dr. dahl...glad to hear good things abt her!

http://www.lowmilksupply.org/frenotomy.shtml#PA
gabbyraja's Avatar gabbyraja 09:23 PM 12-03-2010

Phew! Mama2J, thank you so much for that link. There's at least one in MI. Yay! I was dreading a drive to NY...


laerhk's Avatar laerhk 02:57 PM 02-10-2011

I'm investigating the idea of a Class III or IV upper lip tie on my 2 week old daughter.  I seriously believe I would still be in tears daily if not for this thread!  The resources are amazing and I've already made two appointments: one with my local pediatric dentist (who didn't seem to be aware, but is at least interested enough to call me several times after making the first appointment--once to ask questions and the second time to up the appointment to first thing next week!--and one with a doc in Ann Arbor who was on the lowsupply article list for MI docs familiar with these conditions.

 

Now that I've started investigating and solving the difficulties for my youngest, I took a look at my oldest 6 and a half yr old DD, with whom I thought I failed at BF when her pedi gave up on us at 3 months and the stress led me to formula after much crying.  Guess who has a class IV upper lip tie for sure?!  Thank goodness she doesn't have speech problems (though a few sounds, like shhhhhh, caused problems through Kindergarten until we practiced a lot with her)!  My middle 4 and a half yr old DD was the easiest to BF and we did successfully for 9 months, until it was too much for me to handle with work.  I was so proud of myself with her...and her mouth is free of any ties.

 

Just goes to show we moms aren't losing our minds...those ties really can make a difference!  I don't think my DH still understands that it isn't me or my milk supply ("Honey, I can shoot it across the room.  It's not my supply.")  but I overheard him explaining the appointment to what I can only assume was his mother, so he must be coming around...

 

I just hope I'll be able to update in a few days with some news of success, and that this will be the end of the BF issue for our family (until the next baby, anyway)!

 

 

 

 

 


gabbyraja's Avatar gabbyraja 09:13 AM 02-11-2011

laerhk - is it Amanda Kaufman in Ann Arbor? I was thinking about seeing her as well, as she accepts our insurance. However, I emailed her and she said this:

 

I do perform frenotomy (tongue tie) clipping on infants. I do not practice lip frenulum clipping.

 

I use a sterile scissor, I clip all forms of tongue tie, both the obvious anterior and more difficult posterior ties. I like this resource for information.

http://www.suite101.com/content/diagnosing-tonguetie-in-a-breastfed-baby-a78730#ixzz17dyhe4rr

The book recommended to give doctors in that reference is fantastic and they can read a considerable amount for free through google books just by clicking on the reference.

I have never needed to find out about labial frenotomies because they are often diagnosed after teeth are coming in, noticed when people have a large gap between the front teeth (like David Letterman).

I only have experience in infants, with the latest I've done is 5 months old. I assume older kids will have more bleeding and be harder to hold down, making it more likely I would injury the mouth. My little sister had her tongue clipped by our dentist when she was a 4 year old with a lisp (30 years ago).

There is a lot of controversy among specialists mostly because they don't beleive it causes breastfeeding problems. I think they are all looking to "first do no harm" and don't realize it is a problem. If you present them good information and resources, I hope anyone would help you out. We may need to develop a consortium across Michigan of the providers who will do this to help each other out.

 

So, she can help my infant with one procedure. But I think 4 of my kids have lip and/or tongue ties. Apparently the oral surgery clinic at U of M is able to do all of the surgeries, but 1. they didn't sound particularly knowledgable about any of it and 2. our insurance won't cover any of the procedures, so there's no point in driving all the way there. So, we're seeing Oral Surgery of Lansing next week. They confirmed for me that they are knowledgable  on the subject of type IV tongue tie and do lip ties w/laser. I'll report back on what they say after the consult of $90/child (Gasp!). Will you do so for your doc visit also? And share who they are if it goes well?


treekidsandadog's Avatar treekidsandadog 09:22 AM 02-11-2011

Where are you in Michigan??  UP or LP??  I only ask because we are persuing a dentist in Sault, Ontario to clip my son's lip and tongue...It is an option if you are close enough.  I haven't actually met with the dentist yet, but am working on it.  It is not too expensive either (if your insurance doesn't cover it over there) as their socialized health care keeps costs down.  HTH


gabbyraja's Avatar gabbyraja 10:37 AM 02-11-2011

I'm a troll. :) We live in Lansing. There's apparently a doc in OH that's only a 5 hour drive or so away, but I'd REALLY rather find someone closer. I never thought about heading across the border, though. Thanks for the idea!

 

I've emailed Dr Kaufman to ask her to at least evaluate my 2 little guys. They are exceptional at cooperating at dr's offices and such. Fingers crossed.


treekidsandadog's Avatar treekidsandadog 11:56 AM 02-11-2011

Good luck!!


treekidsandadog's Avatar treekidsandadog 12:36 PM 02-11-2011

Just talked to the dentist office in Sault, ONT and they are going to charge me $35 for a consult and can get us in next Friday!!  That's less than my dental co-pays with my regular dentist!


danipoppins's Avatar danipoppins 01:21 PM 02-14-2011
Looks like this is the spot for me. My two week old had his posterior TT clipped last week by a local ENT. I'm sorry to say I hadn't done a ton of research prior to getting it clipped and only after did I realize his was probably type 4. My 10yo was/is TT as well and I couldn't find anyone to clip it so we struggle through it and managed okay. His was a very different TT (type 1 probably) and tore a bit at one point and stretched over the many yrs of our nursing relationship. This baby's never would have stretched on his own I don't think.

Anyway, the clipping really doesn't seem to have helped much. I'm still in pain at the beginning of every feed and he can barely get his tongue over his bottom lip. He's still clicking during let downs. The ENT was touted as the go to guy for clipping tight frenulums, but I found him to be rather aloof and he didn't give us any exercises to do post frenotomy. It wasn't until 3 days later when I went to the LC specifically for that purpose that I got some to do. Though now I'm worried his tongue may have reattached in the meantime and/or will need to be clipped again. He also didn't evaluate him for a lip tie, which I've since discovered he also has (though he flares fine and it doesn't appear to be having much of an impact if any).

He's getting plenty of milk (a bit of over supply?) and is gaining well. It's just my poor nipples. I've been putting the lanolin on regularly, but it looks like it's giving me an odd rash on my areolas. My nipples are pink, but not cracked or bleeding (one had started to by day 2 and the lanolin cleared it right up).

I'm trying to do some sucking exercises, but he won't suck on my finger or a paci. So far all I've been able to do is rub his gums to get him to stretch it side to side and put my fingers under and manually stretch it up (which makes him gag). Any other ideas for us? Are some pacifiers better than others?

Interestingly, my sister, my mom and myself are all TT and my mom and I both have labial frenula that cause/d a space between the two front teeth. My mom was able to BF me, but not my younger sister and never knew why until my oldest was born and we realized she's TT.

There are a couple of other local docs the LCs gave me names for who are frenotomy friendly. How long might it take to retrain his suck (he was 9 days old when he was clipped)? When should I consider a second clipping/second opinion? How would I know if the labial frenulum is a factor?

(sorry for any typos/auto correct weirdness, I'm typing from my phone)
CelinerD's Avatar CelinerD 09:45 AM 02-22-2011

@danipoppins:

 

After getting tt released, its very helpful to elevate babies tongue as much as possible to keep it from adhering again. I have been told that one can do it even a week after tt release. Sometimes if babies have trouble latching after tt release and it is very painful still, nipple shields can be very helpful for transitioning (yes, they do have a use!). Dr. Evelyn Jain's recommendations for a mom I know was:

 

I usually try a shield AS YOUNG AS POSSIBLE to retrain and strengthen tongue and orofacial muscles. Usu. try a 24 and if he cannot do 24 then go to a 20 mm  shield and graduate to 24 when he is stronger A six weeker may need some persuading by dripping milk onto the shield or popping a feeding tube under the shield to give flow.

 

great web site with excellent links:

 

http://kiddsteeth.com/articles/breastfeedingdrkotlowtx.pdf  (shows exercises to elevate the tongue)..Worth it to do the exercises as much as possible.

 

http://www.tonguetie.net/index.php?option=com_content&task=view&id=8&Itemid=7

 

And sometimes the TT is not released enough. Maybe there is someone else in your community who is more comfortable with this procedure..there is a post on the first or second page of this thread with practitioners all over the country who are experienced in frenotomy. But my experience is that it takes many babies a couple of weeks to get breastfeeding to the place where its no longer uncomfortable after tt release just as it can take a few weeks to get breastfeeding well established without any glitches along the way.

 

Like you, it seems that I had a very tight lip tie - I remember it tearing when I was younger and how painful it was and it seems I was TT'd as well. Eldest daughter has lip tie and was tt'd mildly, I had cracked bleeding nipples for 3 weeks - it was 1980 and we knew nothing then..and my 2nd and 3rd daughters had lip ties, though breastfeeding was not uncomfortable. The older 3 all have spaces between their front teeth as .did I until I was in my 30's

 

Good luck!


gruntlings's Avatar gruntlings 10:38 PM 03-14-2011

I just wanted to thank the person that recommended Dr. Dahl. She clipped my son's tongue today and I've seen an immediate drastic improvement in his latch. 

 

It was a regular tongue tie "to the tip" and so it was not a posterior clipping (although he might need that as well at some point). But she did it in her office with a topical numbing agent only. She said that she usually doesn't do older infants in her office as they can move a lot more and so she usually uses nitrous oxide at the hospital. I asked if she could do it if we were able to make sure he didn't move, and she was comfortable with that as long as we were sure we could restrain him. I swaddled him in my stretchy wrap (sort of like a Moby) so that he couldn't move his arms, and his dad held his head still. The whole thing from swaddling through numbing, snipping, nursing, and him popping off to smile and babble at us after it was all over was 10 minutes.

 

We opted for no injection because the pain of a simple tongue tie release is compared to having one's ears pierced. Local anesthesia hurts more than that!

 

There was minimal bleeding- she pressed a piece of gauze under his tongue and pressed the tongue back once it was snipped, and then had him go right to the breast.

 

She's fast, gentle, very good, and communicative/accommodating.


gabbyraja's Avatar gabbyraja 11:29 AM 12-07-2011

Turned out that Dr Kauffman couldn't participate with my insurance. So, we just paid out of pocket to a local oral surgeon. Oral Surgery of Lansing, in case any future mamas come her elooking for the info. He didn't really see much of a problem with my little ones, but the 8 yr old he agreed we might want to get her maxillary frenulum done. He didn't argue with me about my 4 yr old; would do it if I wanted him to. So, we got both of them done. $475 ea. That was our entire budget for this year. We'll reevaluate the little ones next year. Also, they tried to pull some crap that they don't allow the parents back, but I threw a huge fit, cancelling the appt for my 4 yr old, and they actually went and asked the dr. He said it was fine, and I was back with both kids for their surgeries. Laser took about 1 minute with both of them.


LilMomma83's Avatar LilMomma83 12:50 PM 06-26-2012
Found this old thread on a search I was doing for haberman feeders and tongue tie...anyway thought this might be worth a bump :-)
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