The Diagnosis – Posterior Tongue Tie

Welcome back faithful readers (yes Mom, I realize it’s probably just you!)

In case you missed the first part of my story, you can find that here.

The Cliff Notes version, for those who’d prefer it:  Lucas was born early, we had a lot of issues breastfeeding, he was diagnosed with a bubble pallet, he was eating constantly and causing me a lot of pain, we were told he was a fussy baby and to limit how much I was feeding him, he stopped gaining weight at the rate that was expected, and mommy kept getting blocked milk ducts.

Cue the amazing women on a Mommy Group Board I’m a part of and my mother.  The theory – a posterior tongue tie!

Once we came up with this theory I started doing a ton of a research on the subject.  Here is what I learned:

First, posterior tongue ties can be extremely difficult to diagnose. Because breastfeeding became less popular than bottle feeding many years ago a lot of pediatricians are not skilled at discovering anything other than the obvious “snake” tongue or “1 and 2” tongue ties.  **Oh, I should mention there are 4 “levels” of tongue ties.  The first two are very obvious and easy to see, the 3rd and 4th are considered posterior and make diagnosis difficult. 

Second, tongue ties and lip ties are considered hereditary.  My brother had a tongue tie that was clipped as a baby as well as a lip tie that was not corrected and my father’s brother still has a pretty significant lip tie.

Third, tongue ties, lip ties and bubble pallets are typically related – meaning if you have one, there is a good chance you have another.

And fourth, in order to breastfeed correctly, babies need full movement of their tongue – they need to create a seal around the nipple, preventing slippage, and proper drainage of the breast. A tongue tie prevents this – hence the pain, low weight gain and even plugged ducts you’ll see below.

The one thing I noticed, I got the best information on blogs from other mothers who had experienced something similar to me.  Like I’ve said before, that was the inspiration for this blog – to share my experience and hopefully help other moms and babies create a better breastfeeding relationship!

So what are these tongue tie symptoms?  I’ll highlight the ones we had in an effort to save you from reading too much!

  • Sore, damaged, cracked nipples that do not go away after the first few weeks of breastfeeding
  • Mis-shappen nipples after feeding (flat or pinched typically)
  • Frequent feeding
  • LONG nursing sessions – an hour or more at times!
  • Slow or no weight gain or excessive weight gain (quick explanation – because baby is eating all the time and constantly getting the high calorie foremilk they can gain weight excessively but if feedings are “limited” like was suggested to us they will not gain weight or begin to lose because they aren’t getting enough food)
  • Reflux
  • Hiccups
  • Fussy at breast
  • Tense and unable to relax when feeding – think clenched fists, tension in head/neck, etc.
  • Colic
  • Baby only takes short naps and never sleeps peacefully
  • Cannot maintain a seal on breast/bottle – a lot of leakage
  • Infrequent swallowing
  • Constant need to suck – at breast, on a bottle, paci, fingers, etc.
  • Mastitis or recurrent blocked milk ducts
  • Supply issues
  • Nursing blister on baby’s upper lip
  • Green stools
  • Unable to maintain a latch at breast
  • Noisy feedings – baby makes clicking or popping noises at breast and bottle, loud swallows, etc.
  • Excessive gas
  • Gagging
  • Weak or lazy suck
  • Baby falls asleep when feeding constantly
  • Snoring when sleeping
  • Scoop in the tongue
  • Unorganized suck/swallow pattern – doesn’t suck/swallow but rather you get suck, suck, suck, swallow, breathe.
  • Excessive drool (not related to teething)

Obviously we had a lot of things going on so I wanted to get into the pediatrician right away!  I was pretty sure I had figured out our issue but I needed confirmation and a solution.

We had an appointment a few days later and the pediatrician said it did “look like a tongue tie” but that she “wasn’t an expert.”  She did commend me for sticking with breastfeeding for 11 long weeks of pain.  Here’s where the story gets ugly…I was told that she has never once referred anyone to an ENT for a revision of a tongue tie.  In fact, she didn’t even know where to send me.  She said that because I was obviously committed to breastfeeding and that I would not be okay with switching to bottles she would refer me.  She also said that the ENT probably wouldn’t do anything though.  She was pretty sure no one in our town would do a laser revision on a 4 Posterior Tongue Tie.

I was encouraged and frustrated at the same time!  Thanks for telling me what’s wrong with my child but there is no solution?  I was also told that because of his weight gain (or lack there of) I needed to start offering him a bottle of pumped milk after every feeding – so that meant I needed to start pumping after every feeding!  Thankfully I still had my hospital grade rental pump!

As I was driving home from the doctor I made the decision to call Dr. Lawrence Kotlow’s office in Albany, NY.  All of my research on posterior tongue tie revisions had led me to him and I knew that he would be able to help.  Within minutes I was on the phone with a wonderful office assistant who told me that yes they would be happy to assess my child and preform the oral surgery if Dr. Kotlow believed that was best.

That night we booked our plane tickets and the 6 day wait began!

What to know what happened and what I think of Dr. Kotlow and his office staff?  Check back for the next installment of our Posterior Tongue Tie saga!

Any other moms think their child has (or had) a tongue or lip tie?  What symptoms did your Little One have?

**I am not a lactation consultant and am just presenting the symptoms of a tongue tie as they were presented to me (in my own words of course).  If you suspect your child has a tongue or lip tie please consult an IBCLC or your pediatrician!
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3 thoughts on “The Diagnosis – Posterior Tongue Tie

  1. Good for you, sticking with breastfeeding! I was tongue tied as a child (not sure what my level but I had it clipped 3 times + speech therapy), so one of the first things I asked my dr & LC at the hospital when my son was born was if he was. He wasn’t but it was def one of my concerns. Good luck to you and your LO!

  2. Pingback: The Man Who Fixed a Tongue | MommaAlwaysKnows

  3. Pingback: The End of the Tale and the Real Issue! | MommaAlwaysKnows

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