POSTERIOR tongue tie? Anyone with experience?

[deenass]

My DS is 12 days old and we have been struggling with his latch, my lactation consultant thinks he has a POSTERIOR tongue tie (in the back instead of the front which is much more common and easier to diagnos).

My ped's office has basically never heard of this and right now I have an appt with an oral surgeon on Long Island (who is supposedly the expert at diagnosing and correcting this problem). But with so little info available about this, it makes me a bit nervous.

hoping someone might have some experience with this.

TIA!

[JBaxter]

Honestly I have never heard of posterior tongue tied. I was a hygienist for 17yrs ( still am but havent worked since Nathan was born) I dont remember even reading about it when I was in school. It will be interesting to hear what the oral surgeon has to say.

[rochelsmommy]

when i had my first DD we had tonz of problems - the main one being the crazy insane pain i suffered from. I literally lost a peice of nipple from our issues. bleeding, cracked, ect.
but i also had an oversupply so we had no problems with her gaining weight or anything like that. the LC's i consulted never had an answer for me and considered me a hero for nursing through all this with NO formula.
we weaned at 15 months.

with DD #2 from day 1 at the hospital i had an LC there to help. within 24 hours i was back to the bleeding cracked nipples and the LC immediately noted a posterior tongue tie and high palette.
but when i asked her what we could do to fix it- there was nothing to say. she noted that it wouldnt be easy.
well i was determined to find another answer b/c i refuse to stop nursing.
after talking to 2 more LCs, taking 2 rounds of 2 weeks of diflucan for yeast and 56 pills of antibiotics for mastitis (it was neither of those though) i finally came to the conclusion that it had to be the original diagnosis of tongue tie.
I am great at latching her on. she looks like she's on right, she is OVERWEIGHT for her age, but after 4 months I still am in agony.

apparently nursing has helped her palette adapt to a better lower shape and we think that must have been what heppened with my older daughter and thats why after 6-7 months i was over the pain.

I know it is frustrating and anyone dealing with this probably just wants to give up. i wouldn't blame them. there is only so much pain one person can take. but i LOVE nursing and i am holding on to the hope that after a few more months it will all be better.

please please let us know what the oral surgeon says. I had considered going to one but it hasn't worked out so far. i was also surprised at how little info there is on this and thats why i was skeptical at first. but in our case it seems to be the only thing that makes sense.

good luck. i'm looking forward to hearing what they tell you.
Chani

[o_mom]

I am also interested in what they say.

I always suspected tongue tie with my two, but every LC and the ped said they weren't. When I described my symptoms everyone would say "tongue tie" but then would look at them and they could clearly stick out their tongues. We ended up with occupational therapy which did seem to help, but certainly wasn't an immediate effect.

If this one has the same problems (no central groove, arching tongue, tight jaw) then I think I will push it more.

[pastrygirl]

Yes! Are you seeing Dr. Coryllos? I took my son to her when he was 7 weeks old, because two pediatricians and one ENT in my area all said that he didn't have tongue tie. He couldn't latch on and needed a nipple shield. Once we had it clipped, it took him a few weeks to figure out how to latch on... and it's been great ever since! (He's 9 months old and still nursing a lot.)

The procedure was extremely quick. We were there for a while -- she explained what she was going to do, and we asked lots of questions. She applied a topical painkiller (like Orajel) and snipped it very quickly. It bled very minimally, maybe for a second, then he nursed right away and fell asleep. As we were leaving, there were about 10 couples with babies waiting to see her; she was explaining the procedure to the group.

I plan to take future babies to her within a week or two. There's no reason for me to wait as long as I did (I had seen an LC three times and sent my photos to Dr. Coryllos -- it took a while to get it diagnosed). Now I know that all my kids have a 50% chance of having it, because she also diagnosed my husband!

HTH!
Cristina
mom to Toby, 6/10/06

[deenass]

Yes - we did see Dr Coryllos, my lactation consultant had heard her speak and she suspected the tongue tie and called Dr for us, who said we should come on in.

She took one look at him and confirmed he had it (she looked at our mouths too, but neither DH nor I had one). and she took care of it. He nursed better right away!

I'm dealing with his lousy latch right now (he got a little too comfortable with a bad one) but MAN what a difference.

Pathetic that peds today don't know anything about this - there was a resident in the office that had never heard of this - don't know what I would have done without her!!

[pastrygirl]

Great! I'm glad he's nursing better. I had a bunch of pain for about 4 weeks after the clipping. My son really needed to re-learn how to latch properly. It was so worth it, though! (Now he's almost 10 months old and we're dealing with latch changes because of teeth... LOL!)

I don't know why posterior tongue ties are so unknown. I hope the word gets out soon.

[o_mom]

I am so glad you got help!

Any idea on how to find someone knowledgeable of posterior tongue tie?

[deenass]

My lacatation sonsultant had heard this particular doc speak and so kne here from there. If you pm me at dsamberg-shefsky @ alum.wustl.edu (no spaces) I can email you the doc's phone # along with an article she wrote, maybe she can point you in the right direction?

[o_mom]

CYE!