Tuesday, September 18, 2012

Posterior Tongue Tie, In Short

Many of you- especially my FaceBook friends- have been following the ups & downs of Liam's feeding difficulties. While I plan on writing a fuller narrative of how we discovered his problem and (through many pitfalls and dead-ends!) got a diagnosis, and the finally a correction, I've been wanting to wait until we are further along in the happy chapter of that narrative (I try and remain hopeful that such a happy chapter will come).

A view of his maxillary (lip) tie- see how
it extends all the way through his gum?
But many of our friends & family have also been a bit confused about what exactly is "wrong" with Liam.  He's always been fairly big for his age and seems a perfectly healthy little guy, so what was the big deal?

He has a condition known as "posterior lingual tie"- or posterior tongue tie, PTT for short- as well as a "maxillary tie."  Basically, his tongue was tied down to the floor of his mouth in the back, so it was really hard for him to swallow correctly. Apparently your tongue does all these amazing things in rapid succession-- closing off your airway so whatever you swallow doesn't drown you, and directing it down into your stomach rather than up into your nose. When the tongue is restricted it can't do those things, so he would regularly choke and aspirate milk into his trachea/lungs. This isn't a huge deal with breast milk, which is antiviral, sterile, and easily absorbed by the lung tissue, but you can imagine it would be really really bad with, say, guacamole, in a few years. He also swallowed tons of extra air, causing painful gas bubbles and acid reflux. AND he would get confused and send food up through his nose instead of down into his stomach. Not comfy when it was breast milk, but was LESS comfy when it was Tylenol or Diflucan (a medicine he was taking). Reflux causes its own problems (as I full well know from Eowyn... looking back I wonder if she had a mild PTT that resolved itself around 5 months). Liam also had a lip tied too closely to his upper gum, which made it impossible for him to get an air-tight seal (therefore suction) on a nipple, and could cause cavities and orthodontic problems later. I have a very fast let-down of milk, which would be a challenge for any baby to handle (Eowyn had some difficulties too), but he was absolutely overwhelmed.  On the one hand, the amount of milk that shot down his throat meant he always got enough, but on the other hand, it meant he quickly grew genuinely frightened of eating-- the poor kid felt like he was being water-boarded!  Both ties together meant that his "latch" (the way he grabbed onto whatever he was using to eat) was always too shallow, that he "chewed" rather than sucked.  That's painful for a mom, and can damage her tissues so she has recurrent or chronic infections like thrush, which is in turn bad for the baby (causes colic, skin rashes, sore mouth, fatigue, lowered immune function).  Check for all of the above.
You can see how the frenulum (that little membrane under his tongue)
is pretty raised up from the floor of his mouth

The most pressing problem, though, was his total resistance to eating.  He would refuse to eat-- burying his tiny face away from breast or bottle, screaming, crying, refusing to suck or latch, becoming frantically upset-- for hours.  While most babies his age eat every 3 hours, he would regularly make himself go 6 hours between feedings during the day, and it would take me up to 3 hours to get him to finally eat.  When he did eat he would have the problems listed above, and all of them were just getting worse.  Nursing was hard because it was painful for me, frustrating for him, and physically taxing for us both.  A bottle was no better because he had trouble sucking hard enough to get a bottle down, and he resisted it as hard as he did me.
You can see that he wasn't able to raise his tongue
very high (I never saw him touch the roof of his mouth with it)

The surgery he had was simply a doctor (the dentist Dr. Kotlow in Albany, NY) taking lasers and slicing through those extra membranes (in most people they disappear somewhere along the intra-uterine part of our lives).  Sorry, Daddy Ron-- he won't have a gap between his two front teeth any more. :)

The more I learn about the simple reflexes of swallowing & breathing-- they are actually WAY complex-- the more I marvel at just how fearfully and wonderfully we are made by a GOOD, beauty & order-loving Creator!


Elizabeth Carlson said...

I found this post while searching for answers for my dear sons eating issue and I could have written this myself. He is having his tongue and lip released in a few days...please tell me your son got better after his surgery.

Eowyn's Heir said...

Because of my son's age at time of release, he'd already become orally defensive so our road to recovery was not so straightforward as it could have been. But YES, the release was crucial in his recovery, and we went on to happily, exclusively nurse pain-free until he was 2 years 3 months.

Unknown said...

I know this is years later, but I just found your post as I was searching for information regarding tongue ties and aspirating. My son was found to have severe silent aspiration when he was just two weeks, so he has been on a feeding tube (now 4 months). We recently discovered that he had a tongue and lip tie and we corrected those almost two weeks ago. His next swallow study is in a week. Did your son's aspiration end after correcting his ties?

Eowyn's Heir said...

Yes, he did outgrow it! We did some speech therapy as well. But yes, now he is 6 with absolutely no after effects at all that we can tell.