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my tongue tie story

post #1 of 27
Thread Starter 
Hi everyone:

I have been meaning to do this for awhile. We had a very dramatic experience with tongue tie and I hope our story can help other mamas dealing with this problem.

My baby Beatrice had a tongue tie and we got it clipped. It was in the 4th position, all the way back & not very visible. We didn't even run into trouble until week 3, when things got bad--she couldn't eat & started to lose weight.

Here's what happened. From birth, her latch was strong but somewhat painful. I thought it was just sensitive nipples and I was going through Lansinoh like crazy.

Around 3 weeks, she had a very fussy day. We chalked it up to a growth spurt. However, the next morning I woke up with severe engorgement. Of course, I was obsessively reading Kellymom, and thought that I had an oversupply problem. My husband called about 7 LCs, all of whom said it sounded like oversupply. We began block feeding and pumping off the top. Things got worse.

That day and night were a nightmare. Beatrice could not latch on and began to fuss at the breast to the point where she was becoming furious with me. I was despondent because I could not feed her. She was also becoming lethargic, and she had been such an alert baby from birth. She stopped having poo diapers and her pee became dark and concentrated. I was as low as I have ever been in my life.

The next day we got into see a lactation consultant. We spent 2 1/2 hours there. She said it was tongue tie, not oversupply. After a few rounds of feeding and weighing showed that she was getting nothing from me, I pumped and my husband bottlefed Beatrice, which brought her back from lethargy. I was able to breastfeed her for the next five days, when we had our appointment to get the tongue tie clipped.

The LC (Cathy Watson-Genna) who diagnosed the tongue tie and the doctor who clipped her (Dr. Elizabeth Coryllos) are experts on tongue tie. They told us that a tongue tie can prevent the baby's tongue from properly shaping the upper palate--which is one of the secondary purposes of nursing.

Talking with both of them led me to realize that my brother & I both have a type 4 tongue tie that went unclipped, and we both had problems beyond infancy. I nursed for 9 months but still have a very high palate. I have swallowing issues--my throat won't close all the way and a drop of saliva or whatever will go down the wrong pipe and I'll have a coughing fit. I always thought I was just a dork, but Dr. Coryllos has the same thing & says that I should go to an oral surgeon and get mine clipped because it will get worse as I age.

My brother nursed for only 3 months before my mom gave up. Before he could get braces, he had to have his upper palate spread. Basically the orthodontist put a bar across the roof of his mouth, and twice a day my mom would turn a key to widen the bar. It was very painful for him, and he had to endure it for quite some time.

Dr. Coryllos told us that because tongue tie is only a problem for breastfeeding, in the mid-20th century tongue tie was removed from pediatrics textbooks! This is remarkable because tongue tie is the first recorded surgical procedure in history, mentioned in ancient Egyptian writings. So even pro-breastfeeding pediatricians might not know about tongue tie, or be aware of the ramifications down the road for untreated tongue tie.

The procedure itself was simple, but it was not painless. A Type 4 is all the way in the back of the mouth so it is hard to get to, and the tissue is a bit thicker. Bea needed to be held down, and there was some blood. She was on infant Tylenol for 24 hours. However, her latch was immediately different, and she began sticking out her tongue--we had not seen her do that before. We are so thankful that we got her tongue tie clipped. I believe we would have abandoned breastfeeding otherwise. It is now so easy and painless that sometimes I don't even know that she's popped off and fallen asleep.
post #2 of 27
I am so glad you found Dr. Coryllos. She is truly a wonderful MD and person. Are you from NY? I know people come from all over to see Dr. Coryllos.
post #3 of 27
Thread Starter 
Quote:
Originally Posted by Breastfeeding Insomniac View Post
I am so glad you found Dr. Coryllos. She is truly a wonderful MD and person. Are you from NY? I know people come from all over to see Dr. Coryllos.
Yes, we're in NYC, so it was easy to get to her. She is an amazing woman, very compassionate and wise.
post #4 of 27
Wow It's wonderful that you figured it out relatively quickly and that nursing is going so well for you now. Congrats!
post #5 of 27
Dr. Coryloss was our saviour too. I supplemented for 4 weeks until my son's tongue tie was clipped, one week later I came up to full supply.
post #6 of 27
Thread Starter 
Quote:
Originally Posted by Martha_2sons View Post
Dr. Coryloss was our saviour too. I supplemented for 4 weeks until my son's tongue tie was clipped, one week later I came up to full supply.
wonderful that you hung in there!
post #7 of 27
Dr. Coryllos helped us too and Kathy Genna is great! I used her colleague Barbara Latterner, who's also awesome. SO glad you found good help!

Oh, and we used arnica 30C a bunch of times after surgery for pain relief...it worked great. And dd1 had to have her upper lip frenulum clipped too.

I thought the surgery was traumatic by Dr. Coryllos made it as good as possible and we nursed immediately afterwards. (I have heard she no longer does this but now applies pressure for some tie before returning the baby)
post #8 of 27
Thread Starter 
Quote:
Originally Posted by Nan'sMom View Post
And dd1 had to have her upper lip frenulum clipped too.
Q


We had that one, too--
post #9 of 27
Glad you got it fixed! Tongue tie (along with some uninformed pediatricians) almost destroyed my bfing relationship with my daughter. I finally found this doctor: http://twofloridadocs.com who fixed it (but not after I had been told by my pediatrician, a pediatric surgeon and a pediatric ENT that tongue tie did not affect breastfeeding, but they would be happy to put my DD under GA to fix it, just so it wouldn't affect her speech later on).
A quick snip in the office, some APNO and some domperidone for my supply and everything was better!!!
We are still bfing over two years later. I hope you continue to have a wonderful bfing relationship with your daughter.
post #10 of 27
Thread Starter 
wow--amazing!
post #11 of 27
You are so lucky to be in NYC!!!! I live in Raleigh, North Carolina, and am dealing with a type 3-4 tongue tie. The LC I'm working with is super knowledgeable and I even have some articles on tongue tie written by Dr. Coryllos and Cathy Watson-Genna (those two are the best!). But the Peds and ENT's here have their heads up their *** when it comes to breastfeeding. Well, I shouldn't really say that. The ped. seems to see the problem, but peds down here don't clip, they refer out to ENT's and I've seen two ENT's and they are both like, "um...no he's not tongue tied."

The problem is that he CAN extend his tongue out, he just doesn't have the strength to main the extension. He can, however, take a bottle so of course he's gaining weight so nobody sees it as a *problem*. :

Anyway, thanks for posting your story! I'm so glad it worked for you. If NYC wasn't a freakin' 10 hour drive away, I would have considered it...
post #12 of 27
Thread Starter 
that is so frustrating! i hope you find someone to help you--
post #13 of 27
I had problems from birth w/ ds2. After several doctors telling me to just bottle feed him if nursing was so painful (and yet ALL agreed that it would need to be done at 9mos of age b/c it was severe and would interfere w/ speaking!), I finally found an ENT willing to help us. Dr. Daniel Berner on Concord Rd in Lafayette, IN, is a wonderful, friendly, helpful man, and I was very happy to meet him and have him do the surgery on both ds2 for severe tongue-tie (he had to have a z-plasty under genral at 4weeks of age b/c it was very thick and would have grown back together w/ a regular "clip." It was done w/ a laser and there was no blood whatsoever) and a year later for adenoid removal for ds1. He was very sweet and helpful man and great w/ both of my boys. He 100% agreed w/ me that our breastfeeding relationship was well worth the surgery, unlike the other doctors I'd been sent to.
post #14 of 27
Moping because the health care professionals around here suck!!! Which means, my baby does not SUCK!!!
post #15 of 27
I'm near Boston and the LC that I saw recommended Dr. Coryllos to us. My parents are in NYC so we went for a quick trip when my son was 7 weeks old. I wish we'd gone sooner! They delay was because I saw two pediatricians and one ENT here, and all three said that Toby didn't have tongue tie. I sent photos to Dr. Coryllos and she said he absolutely did. Turns out my husband does, too, so we might face this with every baby. Next time I'm not waiting so long.

We're still happily BF at 19 months!
post #16 of 27
There is also Dr. Cliff O'Callahan in Middletown, CT.

He is amazingly kind too!
post #17 of 27
I'm so glad to hear that Dr. Coryllos was able to help you. My baby had a tongue tie which was caught when I was lucky enough to be referred to Cathy Watson Genna because I was having nipple pain. Cathy noticed the tongue tie and I had it clipped. Unfortunately it was not clipped enough and my baby still isn't able to suck properly (she also has a very high palate). The consensus among Cathy, a speech pathologist, and another LC who specializes in sucking problems is that I have to pump and bottle feed until the baby gets a little bigger (she's only 2 wks old now) and then try BF'ing again. I'm going to make an appt w/Dr. Coryllos and see if she thinks further clipping will help. As if having a new baby isn't stressful enough, I never thought I would be dealing with BF'ing problems.
post #18 of 27
Thread Starter 
Quote:
Originally Posted by emmapants View Post
I'm so glad to hear that Dr. Coryllos was able to help you. My baby had a tongue tie which was caught when I was lucky enough to be referred to Cathy Watson Genna because I was having nipple pain. Cathy noticed the tongue tie and I had it clipped. Unfortunately it was not clipped enough and my baby still isn't able to suck properly (she also has a very high palate). The consensus among Cathy, a speech pathologist, and another LC who specializes in sucking problems is that I have to pump and bottle feed until the baby gets a little bigger (she's only 2 wks old now) and then try BF'ing again. I'm going to make an appt w/Dr. Coryllos and see if she thinks further clipping will help. As if having a new baby isn't stressful enough, I never thought I would be dealing with BF'ing problems.
so sorry-- hang in there!
post #19 of 27
My babe is 14 months old (and still nursing) but I just saw this sticky and wanted to add our care providers to the list. These are for the D.C. area:

LC: Pat Shelley, Breastfeeding Center of Greater Washington
ENT: Dr. John Bosworth, Seigel & Bosworth, Rockville, MD

Dr. Bosworth clipped ds's tongue at 3.5 weeks pp and saved our breastfeeding relationship - and then he went to bat with the insurance company to get the procedure covered as medically necessary!
post #20 of 27
Thread Starter 
awesome--you should post in the FAQ--
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