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Tongue and Lip Tie FAQ - Page 4

post #61 of 151
Quote:
Originally Posted by loraxc View Post
It sounds like posterior tongue tie does not HAVE to be a surgery with anesthesia, yes?
Dd1's was definitely posterior and definitely a simple clip after anesthetic cream. Feel free to pm me, if nothing else for a shoulder to cry on. If I were you I'd start contacting the people who know about tongue tie--Dr. Coryllos, Brian Palmer, Cathy Genna, Barbara Latterner, etc. and ask them who they know who'd good at TT clipping for posterior. They tend to be passionate about it, very kind and very helpful. Dr. C, for instance, charges something like $75 for the procedure and spend over an hour with you, and this is someone who used to be chief of surgery at her hospital, so she's definitely not doing it to make big bucks. You REALLY want someone experienced and IMO, preferably a trained surgeon (i.e., not a pediatrician or an ENT). I know two people who had it done by an ENT and had to have it re-clipped because the ENT didn't do enough.

Also if there's a good reference from this thread (I haven't gone back to look) then try calling that one and consider traveling the 3.5 hours (gosh, sounds awful with a tiny one but maybe worth it).
post #62 of 151
I live about 3.5 hours from Dr. Punger, who has been recommended by an MDC member and has a special interest in releasing tongue ties. I am so excited that we may have an answer!! It is especially poignant because I had the same problems with DD #1. She does not seem extremely tongue-tied to me now at age 4, but is obviously lip-tied like her brother, and I wonder if she has tongue-tie and it has stretched. I BF her for 6 months at breast through terrible pain and then EPed for 9 months.
post #63 of 151
Good info. DH had a tongue-tie and it cause speech problems throughout his childhood. His pediatrician clipped it when he was 8 years old or so, he remembers it as being very painful. When DS was born with tongue-tie (I think it was very tied-down, his tongue wouldn't extend enough to make a good latch possible) and then we had so many nursing problems he thought it would be a good idea to get it clipped as soon as possible. We did it when DS was a couple weeks old and I think it did help with nursing. I didn't have as many resources as I do now, but Dr. Sears was very strongly for clipping it. It was actually very simple, they clip it with what looks like little fingernail scissors, there was maybe a drop of blood (I couldn't watch, but DH held DS for the pediatrician) and I nursed him right afterwards and really DS didn't seem too upset about it, less than with his heel-sticks for bili testing. If it has helped with nursing I am so glad we did it though because we've been nursing for nearly 2 years now and it has been so important to us.
post #64 of 151
Just thought I'd mention that I talked to my mom today and told her about DS, she immediately said, "Oh, I was born tongue-tied too! They saw it right away and clipped it." My father's brother also was born TT and had it clipped. Both my parents were actually astounded that this is not checked for routinely any more and that most peds won't do the clip. Darn you, bottles and formula...

By the way, I now also realize that I am mildly tongue-tied too! I had no idea, but DH was laughing at me and how pathetically short my tongue is when I stick it out! But I was BF with no problems. I guess it must vary.
post #65 of 151
Quote:
Originally Posted by loraxc View Post
Just thought I'd mention that I talked to my mom today and told her about DS, she immediately said, "Oh, I was born tongue-tied too! They saw it right away and clipped it." My father's brother also was born TT and had it clipped. Both my parents were actually astounded that this is not checked for routinely any more and that most peds won't do the clip. Darn you, bottles and formula...

By the way, I now also realize that I am mildly tongue-tied too! I had no idea, but DH was laughing at me and how pathetically short my tongue is when I stick it out! But I was BF with no problems. I guess it must vary.
It really does! DH and I clipped mine the other night (after seeing DS's done) and while I don't have a normal extension I have already seen/felt a difference in my day to day life. I have yet to get an ounce of heartburn from the things that used to trigger it like mad! It really didnt hurt all that much. No more so than biting your tongue.
post #66 of 151
Quote:
Originally Posted by Mommy2Austin View Post
It really does! DH and I clipped mine the other night (after seeing DS's done) and while I don't have a normal extension I have already seen/felt a difference in my day to day life. I have yet to get an ounce of heartburn from the things that used to trigger it like mad! It really didnt hurt all that much. No more so than biting your tongue.
hey sarah can you tell me more baout this connection between tongue tie and heartburn?

one of my boys with tt (2 of them have what looks like type 1 and I successfully bf them both well past that first birthday!) suffered from severe GERD. he's 4 and still barfing. I've never heard that there could be a connection between the two things before.

eta: neither of my boys have speech problems. they are nearly 7 and 4yrs.
post #67 of 151
Quote:
Originally Posted by Rockies5 View Post
hey sarah can you tell me more baout this connection between tongue tie and heartburn?

one of my boys with tt (2 of them have what looks like type 1 and I successfully bf them both well past that first birthday!) suffered from severe GERD. he's 4 and still barfing. I've never heard that there could be a connection between the two things before.

eta: neither of my boys have speech problems. they are nearly 7 and 4yrs.
If you look at the Brian Palmer study he talks about one of his patients having severe gastrointestinal issues that had her on a plethora of medications and a few months after having her tongue fixed she was completely off all the medications!

http://www.brianpalmerdds.com/pdf/frenum_pdf.pdf

If you put in the number 66 it will take you straight to that slide. It really does make sense!
post #68 of 151
I uploaded some pics of DS's tongue. I would love it if anyone with experience with posterior ties would look at them and see what they think. I am pretty sure he really has this, but before I go in with guns blazing I want to be 100% sure.

Heart-shaped tip:

http://i4.photobucket.com/albums/y10...c/325025-1.jpg
http://i4.photobucket.com/albums/y10...c/325026-1.jpg
http://i4.photobucket.com/albums/y10...c/325013-2.jpg

This seems to be as much as he can extend it:
http://i4.photobucket.com/albums/y10...c/325019-2.jpg
http://i4.photobucket.com/albums/y10...nec/325018.jpg

Not going to roof of mouth when he cries:
http://i4.photobucket.com/albums/y10...nec/325027.jpg

ETA a few more:

See, it's not the classic one where it's at the tip of the tongue. This confuses me a bit--it's still tied, right?

http://i4.photobucket.com/albums/y10...c/325034-1.jpg
http://i4.photobucket.com/albums/y10...nec/325040.jpg

Also, does anyone have contact info for Elizabeth Coryllos and Catherine Watson Genna?
post #69 of 151
Dr. Elizabeth Coryllos 516 671-6816 (Long Island)
Cathy Genna 718-846-2323 (Queens)
post #70 of 151
Thank you!! What about their email addresses--anyone have that?
post #71 of 151
Thread Starter 
Here's Catherine Watson Genna's email,
cwgenna@lactspeak.com

and from another site:
EMAIL: cwgenna@covad.net
PHONE: 718 846-2323

and some contact info on Dr. Coryllos, don't know how current:

Elizabeth Coryllos MD,MS,FAAP,IBCLC
8 Jaegger Drive
Glen Head NY 11545
United States
Phone: 516-759-4411
Fax: 516-759-4441
Email: pflardi@optonline.net
http://www.breastfeeding.com/directo...s/newyork.html


Here's more pics of different tongue tie types from an ILCA conference presentation by Genna & Coryllos:

http://www.ilca.org/conference/07/01..._genna_ppt.pdf
post #72 of 151
Thread Starter 
If someone has a professional interest in this field check out some conferences in 2008 in California:

http://www.californiabreastfeeding.o...ferences2.html

For instance, "Tongue-Tie: From Confusion to Clarity James Murphy, MD, FAAP and Catherine Watson Genna, BS, IBCLC"
http://www.californiabreastfeeding.o...April_2008.pdf
post #73 of 151
Update: we saw a GREAT pediatric OT/infant feeding specialist today who confirmed that DS definitely has a type 3/4 (posterior) tongue tie. His suck is all messed up and he's compensating for his poor tongue action by mangling my poor nipples. She showed us some exercises we can do, but was in agreement that a physical fix is the way to go, saying it's bad enough that he will probably even have trouble eating solids. I now have the name and number of pediatric ENT in town who is interested in seeing him and potentially performing the release.

YAY!! And thank you MDC. I have to point out that two midwives, his ped and the LC (intially) ALL missed this, even though I specifically asked the ped to check his tongue. It's sort of shocking.
post #74 of 151
I'm posting the name of the great pediatric occupational therapist who diagnosed DS's posterior tongue tie, recommended the tongue release, and referred us:

Elayne McNamara
Shands-UF Hospital
Gainesville, FL

She works in the NICU, however, and I'm not sure how often she sees full-term babies. My LC got us in to her.

I hope to able to post the name of a ped ENT who does the clips next...but we have yet to see him.
post #75 of 151
Quote:
Originally Posted by loraxc View Post
Update: we saw a GREAT pediatric OT/infant feeding specialist today who confirmed that DS definitely has a type 3/4 (posterior) tongue tie. His suck is all messed up and he's compensating for his poor tongue action by mangling my poor nipples. She showed us some exercises we can do, but was in agreement that a physical fix is the way to go, saying it's bad enough that he will probably even have trouble eating solids. I now have the name and number of pediatric ENT in town who is interested in seeing him and potentially performing the release.

YAY!! And thank you MDC. I have to point out that two midwives, his ped and the LC (intially) ALL missed this, even though I specifically asked the ped to check his tongue. It's sort of shocking.

Hi. We were in the same situation, except we are in England which is even worse for diagnosing posterior tongue ties. My son had a very severe posterior tongue tie, it has been snipped TWICE by the most experienced surgeon in England, however it is still tied ( he does not even elevate it when he cries and he cannot even suck on a bottle ) So we are flying to NY on Monday to see Dr. Coryllos!!!

Incase anyone's wondering about whether to snip or not, here's some info I've researched through lots of chats with CWG and others....

Babies are formed with the tongue bonded to the floor of the mouth and it should gradually recede about 8 weeks gestation I believe. Anything left over is a remnant and that can cause the problems, so the frenula that's being snipped is something that shouldn't be there anyway. Its true that some babies manage fine, but many babies have to compensate by using excessive jaw movement or lip movement. Also it can cause speech problems, palate and dental problems. My baby is getting milk in his airways ( makes a growly wet sound after feeding ) because the back of the tongue can't elevate to seal off the soft palate , this can lead to aspiration, ear infections and all sorts of problems (good job he's still getting my milk )

Don't know if that helps anyone, its just I know how frustrating it can be when people try to paint you as a cruel mother jut because you are trying to get the best for your baby.

Hope your sons feeding improved after the snip. If in any doubt get it checked out asap ( I left mine for weeks thinking he would improve, because noone thought it possible that he could still be tied, now not sure if he'll ever get back to breast feeding )
post #76 of 151
Wow, berensmum, good luck to you. I hope you get a chance to update.
post #77 of 151
I've been meaning to mention something: the OT gave us a Gerber Natural Flex pacifier to use with DS for sucking exercises. I actually bought one of these for him when he was born and noticed that he could not suck it AT ALL. He still really can't, though we are trying to teach him to (he uses a Mam paci which he can "gum"). Anyway, this could be a little test for people who are wondering about TT, I think: if your baby cannot keep hold of these pacis (just rolls them back and forth and spits them out) his/her suck is probably not good. They require a good tongue cupping action to stay in.

You can see them here:
http://www.gerber.com/prodcat?catid=579
post #78 of 151
Uuuggh.

Saw the ENT this morning and he will do the clip, but wants to do it under general anesthesia. He also wants to put in dissolvable stitches. He says this will lessen the risk of scarring that could reattach the tongue. The OT mentioned this as well...but I really hate the idea of putting my TINY 3mo (he's still well under 11 pounds) under GA, even for 5 minutes. I scheduled the surgery anyway, but I do not feel good about it and may cancel. I called my general ped and she is going to talk to the MD she knows in town who does in-office clips and get some second opinions.

I just...oh man. What if something happened because I had him have surgery with GA for this minor-ish thing? It's not like he needs heart surgery here. I could pump, I could FF, I could supplement...

The other thing is that I wasn't terribly impressed with the ENT's knowledge of TT. He described DS's as "mild," which is pretty much the opposite of what the OT said....

So confused.
post #79 of 151
Quote:
Originally Posted by loraxc View Post
Uuuggh.

Saw the ENT this morning and he will do the clip, but wants to do it under general anesthesia. He also wants to put in dissolvable stitches. He says this will lessen the risk of scarring that could reattach the tongue. The OT mentioned this as well...but I really hate the idea of putting my TINY 3mo (he's still well under 11 pounds) under GA, even for 5 minutes. I scheduled the surgery anyway, but I do not feel good about it and may cancel. I called my general ped and she is going to talk to the MD she knows in town who does in-office clips and get some second opinions.

I just...oh man. What if something happened because I had him have surgery with GA for this minor-ish thing? It's not like he needs heart surgery here. I could pump, I could FF, I could supplement...

The other thing is that I wasn't terribly impressed with the ENT's knowledge of TT. He described DS's as "mild," which is pretty much the opposite of what the OT said....

So confused.
IMO, if you can swing the finances better to travel far to one of the experts than to get an ENT to do it with stitches and general. The tongue is on constant motion and does not easily re-attach. I think you need someone else. Sorry--I well remember how stressful this was for us!
post #80 of 151
Quote:
Originally Posted by loraxc View Post
The other thing is that I wasn't terribly impressed with the ENT's knowledge of TT. He described DS's as "mild," which is pretty much the opposite of what the OT said....
IMO, you REALLY want someone who knows what they're doing performing this. I have two friends who used ENTs who did the clip not enough and they had to have it re-clipped. How Dr. Coryllos does it is a straight clip then you get the baby back to breastfeed almost immediately since the nursing suction stops the bleeding. I don't mean to overstep here but if I were you I don't think I'd use the ENT you mentioned. Does he say how many he has performed on tiny babies? How soon you'd get the baby back? (Often they don't call you in right as the baby wakes up, depends what the nurse on duty feels like doing)
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