Those with posterior tongue tie experience

[sattygirl99]

My IBCLC told me DD has a type 3 or 4 tongue tie... We've seen 2 ENT's and 1 pediatric dentist... 1 ENT says 'no way does she have a tongue tie, she has perfect mobility of her tongue!'. The 2nd ENT says 'well, there is something abnormal about her tongue but we don't know how to correct that type of tie'. Ped dentist says 'I don't see anything wrong, except that the base of her tongue is wider than average.'

SO... Best I could do with a 2 week old... It matches every pic of a posterior tongue tie that I've come across online... She can't reach the top of her mouth when she cries, as you can see (she's crying in this picture). She can extend her tongue, but no further than the lower lip.

http://i79.photobucket.com/albums/j1...6/IMG_0009.jpg

Is this a good enought picture to send to Dr. Coryllos and Catherine Watson Genna? I trust my IBCLC but before I travel to NY, I'd like for them to tell me 'yup, thats what it is.'.

TIA!

[nettieferg]

Hi Sattygirl :-)

Well - I have no idea what an 'IBCLC' is, but I DO know tongue-tie. My son has it, and, if he was awake right now I would send you a picture. His tongue was/is attached to the floor of his mouth, all the way to the tip of his tongue. This resulted (and still does, actually) in his tongue NOT being able to extend from his mouth. When he sticks out his tongue, the middle portion rolls out instead, and makes a 'w' shape (from the bottom). A really good picture of tongue-tie can be found in Dr. Sears' 'The Baby Book'. I cannot tell for sure from your VERY cute/sad picture, but, I don't THINK that your baby looks like my son. We never had my son's cut, and he went un-diagnosed, which led to me having breastfeeding difficulties and giving up altogether (I continued to pump milk for 5 months, but ended up drying up :-( . . . still, better than nothing- but, much worse than what *could have been*) -- He was never checked at the hospital -- I took him to a doctor, pediatrician said there was nothing wrong with his suck, said it was MY problem, I never got a second opinion and wish to this day that I had. He was FINALLY diagnosed at his first dentist appointment (18 months) when the dentist looked at me in a very suprised way, and asked, "how did you manage to breastfeed your son?" -- Right. As a matter of fact, I didn't! Come to find out, the pediatric dentist could have clipped the tongue immediately, and I could have had a great nursing relationship with my son.

Moral of the story: DON'T GIVE UP! Contact anyone you can, La Leche League comes to mind --also, if you have Bradley Birthing Instructors, mine had lactation consultants to which she referred me for my current baby (#3 :-) -- get lots of second opinions!

Good Luck!

[PatioGardener]

Good picture! That coupled with your description of how far she can stick her tongue out (and if it ever touches the roof of her mouth while crying - that is important too) and your breastfeeding issues should help to give the whole picture.

good luck!

ps. Nettieferg, it sounds like your baby had the more classical 'anterior' tongue-tie.

[sattygirl99]

Originally Posted by nettieferg

Hi Sattygirl :-)

Well - I have no idea what an 'IBCLC' is, but I DO know tongue-tie. My son has it, and, if he was awake right now I would send you a picture. His tongue was/is attached to the floor of his mouth, all the way to the tip of his tongue. This resulted (and still does, actually) in his tongue NOT being able to extend from his mouth. When he sticks out his tongue, the middle portion rolls out instead, and makes a 'w' shape (from the bottom). A really good picture of tongue-tie can be found in Dr. Sears' 'The Baby Book'. I cannot tell for sure from your VERY cute/sad picture, but, I don't THINK that your baby looks like my son. We never had my son's cut, and he went un-diagnosed, which led to me having breastfeeding difficulties and giving up altogether (I continued to pump milk for 5 months, but ended up drying up :-( . . . still, better than nothing- but, much worse than what *could have been*) -- He was never checked at the hospital -- I took him to a doctor, pediatrician said there was nothing wrong with his suck, said it was MY problem, I never got a second opinion and wish to this day that I had. He was FINALLY diagnosed at his first dentist appointment (18 months) when the dentist looked at me in a very suprised way, and asked, "how did you manage to breastfeed your son?" -- Right. As a matter of fact, I didn't! Come to find out, the pediatric dentist could have clipped the tongue immediately, and I could have had a great nursing relationship with my son.

Moral of the story: DON'T GIVE UP! Contact anyone you can, La Leche League comes to mind --also, if you have Bradley Birthing Instructors, mine had lactation consultants to which she referred me for my current baby (#3 :-) -- get lots of second opinions!

Good Luck!

Yup, that sounds like you classic anterior tie, which is most commonly diagnosed. Posterior ties happen near the base of the tongue, almost in the mucus membrane in the back of the mouth. That's been our biggest issue... Everyone knows the anterior ties but no one seems to know (or understand or want to fix) about posterior ties. Posterior ties are actually very common however often go undiagnosed because baby has mobility of the tongue, though limited.

IBCLC - International Board Certified Lactation Consultant

Thanks!

[sattygirl99]

Originally Posted by PatioGardener

Good picture! That coupled with your description of how far she can stick her tongue out (and if it ever touches the roof of her mouth while crying - that is important too) and your breastfeeding issues should help to give the whole picture.

good luck!

ps. Nettieferg, it sounds like your baby had the more classical 'anterior' tongue-tie.

I've never seen her tongue reach the top of her mouth while crying. When she has huge crying fits (which I try to prevent, lol) she gets really tired and hoarse sounding from the tongue not working properly. Her mouth also gets really dry too. Even in her worst of fits, that's as high as I've ever seen her tongue go during crying.

The problem is that she CAN extend her tongue, to lower lip but can't maintain that. She doesn't do it often either, I imagine it probably doesn't feel good to stretch her tongue that far, lol.

Our breastfeeding difficulties include:

Improper latch
Shallow latch
Chewing on nipple
Clicking or popping while nursing
The edge of my nipple being 'flicked' with her tongue while nursing (when the tongue should be well under the nipple!)
Low milk transfer (she's only taking .5 oz per nursing usually)
Slow weight gain
Low supply (this is a guess as I can't pump for beans!)
Constant nursing (usually hourly and for long periods of time)

Among other things.

Thanks! I'm sending my email off now!

[Sassafrass]

Originally Posted by sattygirl99

I've never seen her tongue reach the top of her mouth while crying. When she has huge crying fits (which I try to prevent, lol) she gets really tired and hoarse sounding from the tongue not working properly. Her mouth also gets really dry too. Even in her worst of fits, that's as high as I've ever seen her tongue go during crying.

The problem is that she CAN extend her tongue, to lower lip but can't maintain that. She doesn't do it often either, I imagine it probably doesn't feel good to stretch her tongue that far, lol.

Our breastfeeding difficulties include:

Improper latch
Shallow latch
Chewing on nipple
Clicking or popping while nursing
The edge of my nipple being 'flicked' with her tongue while nursing (when the tongue should be well under the nipple!)
Low milk transfer (she's only taking .5 oz per nursing usually)
Slow weight gain
Low supply (this is a guess as I can't pump for beans!)
Constant nursing (usually hourly and for long periods of time)

Among other things.

Thanks! I'm sending my email off now!

You are describing my 5mo! These were exactly her symptoms, but we couldn't find anyone to clip it. 3 different LCs agreed, but knew of no one in our area that would help. They said that most Moms just give up at this point. If I hadn't been so knowledgable and personally knew all the BF knowledgeable people I know, I would have too.

My nipples were in excruciating pain, and she was still losing weight at 10 days. Everything looked good from the outside, but it felt like she was tapping the end of my nipple with her tongue. Her transfer was extremely low, so my milk supply took a nosedive. Are you working to protect your milk supply? I needed to supplement to get her to gaining weight. For the first week or so, I needed to use formula to get enough, after that, I was able to pump enough BM using a Lactina....It took me about 3 weeks of pumping 10x/24hrs to rebuild my milk supply.

I did use a bottle, and the "finish at the breast method" When DH was home, we used a finger feeder for supplementing. I just could not manage to do so with all the other kids, and no one around to help. You could use a sns, too....but it didn't work for us.....she couldn't transfer the milk from that, either. Just no suction.

The good news is that we kept at it, and around 6 weeks, we were done supplementing.: Now, she still nursed constantly, and only in the past couple of weeks has she started going to every 1.5hrs or so. The clicking stopped about 3.5 mos. The pain is still there at latch-on, but nothing like it was. I can see her tongue, now, when I pull her lip down, while nursing. She just couldn't maintain that in the beginning. Her weight gain is great, now! about 14lbs at 5mos., up from 6.5 lbs at her lowest.

So, while it did make nursing miserable for this old pro, for the first few months, it has worked itself out. I also highly suspect that #3 had this issue, as well. Because we had some of the same problems.

I did know about the dr's in New York, but being from SC, that was just too far to travel for us. If DD hadn't hated the car, and DH could have gotten some time off, we might have tried it, though.

Good luck....I know how hard this battle is.

[loraxc]

Does it have a heart shape at the tip of his tongue when he extends it?

Some links:

http://parenting.ivillage.com/newbor...,,91wd,00.html
http://www.tonguetie.net
http://www.ghorayeb.com/TongueTie.html

[loraxc]

Here are some pics of DS's tongue. He had/has (it was incompletely clipped) a posterior tie. These are pre-clip.

http://i4.photobucket.com/albums/y10...325027trim.jpg
http://i4.photobucket.com/albums/y10...325040trim.jpg
http://i4.photobucket.com/albums/y10...325025trim.jpg
http://i4.photobucket.com/albums/y10...325026trim.jpg

http://i4.photobucket.com/albums/y10...5019trim-1.jpg

[PatioGardener]

Originally Posted by sattygirl99

I've never seen her tongue reach the top of her mouth while crying.

This is often even more of a problem than not being able to extend the tongue passed the gum line. Or at least they are of equal importance and both need to be considered because the up and down movement is important to nursing just like the tongue extension. Most health care professionals know about the extending part but not about the touching the roof of the mouth part, so can miss a posterior tongue-tie.

It sounds like you are working hard to deal with this. I hope you get the help and support you need. When you do get it clipped, please talk to who clips it about boosting your supply up too. In Canada, domperidone is usually discussed as a short term medical 'boost' to help low supply from tongue-tie.

Good luck!

[tanyalynn]

One thing that's easier to see that often co-exists with a posterior tongue tie is a high, arched palate. Both my kids have a ridge down the middle of their palates, from the front of their mouths toward their throats. I don't know if these _always_ co-exist or not, I've had a hard time figuring that part out.

My 1st seems to have a posterior tie, while my 2nd has both (but interestingly, both nursed just fine, I only realized this when the kids were 2yo and 5yo). But I'd keep looking to find someone, personally I'm thinking this is important to address (beyond nursing difficulties, which are obviously your immediate concern, as they should be).

After you get the tongue tie clipped, really, really consider cranial-sacral work (maybe even later the same day the tie is clipped). It will help baby re-learn the motions of proper nursing (lots of hours nursing in an odd, constricted way right now) and it can help draw down the palate as well.

[kayjay]

It sounds like you're looking for confirmation on whether your baby has a posterior tongue tie before you make the effort to travel somewhere to have it clipped. From the way you describe your symptoms, especially, it sounds like it could be a type 3 or 4 tie.

I dealt with that same problem in October last year...my LC told me that 6- week-old DS looked like he had a posterior tie, but that it would be impossible to find someone to clip it.

She was almost right. We went to a pediatric ENT (a world renowned one) who opened my son's mouth and declared that there was no frenulum to clip. He told me that it was a behavioral issue and referred me to the feeding team. Ha! We left.

Next was a pediatrician at the children's hospital breastfeeding clinic. I pushed her and she said that his tongue looked like it "may be what some describe as a posterior tongue tie." She really didn't want to make a diagnosis, and I don't think she believed in it.

I got a referral from Cathy Genna to a dentist near me, (Dr. Notestine) and I called him and described what I saw and felt. DS's frenulum was behind the mucosa, but I could still feel a tightness with my finger. The dentist clipped it the next Monday.

So, even though professionals have told you that they don't see anything wrong, look at your constellation of symptoms. They speak volumes. I had the same symptoms (except I had over supply and DS was gaining).
After clipping, he stopped clicking when nursing, and my very very sore nipples healed up, and now I can see his tongue resting over his lower gums (he's 4.5 months now).

It's interesting that you mention hoarsness. The day we got DS's tongue clipped, I noticed that he cried much louder and clearer. His tongue could elevate. It's still short, but it was clipped enough so that he could breastfeed, which is the most important thing for this time in his life.

So, don't give up. Keep looking for someone who will do something.

[loraxc]

One thing that's easier to see that often co-exists with a posterior tongue tie is a high, arched palate. Both my kids have a ridge down the middle of their palates, from the front of their mouths toward their throats. I don't know if these _always_ co-exist or not, I've had a hard time figuring that part out.

Both my children have posterior tongue-tie and what has been termed a "bubble" palate (high and arched with dramatic slope at the back). DH has a very high arched palate and sleep apnea. I have tongue tie. Yeah, my kids won the genetic lottery. Interestingly, we were both BF with no issues.

[tanyalynn]

Originally Posted by loraxc

Both my children have posterior tongue-tie and what has been termed a "bubble" palate (high and arched with dramatic slope at the back). DH has a very high arched palate and sleep apnea. I have tongue tie. Yeah, my kids won the genetic lottery. Interestingly, we were both BF with no issues.

We're having some interesting discussions over in the Allergies forum on inherited nutritional deficiencies as related to stuff like this--my mom has the same palate my son and I do, it's been generations (no idea how many!) since we had healthy, well-formed mouths. I'm worried about sleep apnea and my husband, and I'm hoping (haven't done it yet) that CST can help my daughter's palate widen and come down, if I don't do anything, I think she will have the same types of problems (maybe even worse) as my husband.

[PatioGardener]

bump

[yentroc]

reflux?

Just found this old thread...

I'm getting my ds checked for tongue tie, calling a local Dr. tomorrow who is supposed to be the area expert.

One question: does anyone know if reflux can be related to tongue tie and high palate?

My ds is very refluxy and has all the above described symptoms of posterior tongue tie. He is VERY hoarse and I attributed it to the reflux but it's interesting to hear others mention hoarseness with tongue tie. But he definitely has reflux and we're so close to starting meds for him and I really would rather not but he's in so much pain. So, it would be so cool if resolving tongue tie would help the reflux...

[mrs.mountjoy]

reflux?

Yes, I have heard of reflux being connected to TT, but I don't know why. www.brianpalmerdds.com might have something on it.

I am just trolling through the web trying to find clues to determine if my DD (now 2yo) has a posterior tie. We've managed 2 years and counting of BFing, but I worry about apnea and orthodontic problems. She has a poor latch, reflux, disturbed sleep due to breathing difficulties (apnea??), can't say 'R' sounds, slight 'v' to her front bottom teeth, a very definite labial tie, and a ridge along her palate. I don't know if she has a high palate - no health professional has so much as looked in her mouth because her weight-gain has been fine (nevermind that it took 40 minutes of two-handed nursing every hour tp acheive that!), and "lots of mothers find breastfeeding difficult".

We see a ped. next week to assess possible multiple food allergies, so off to check out the allergy forum.

Good luck.

-ML