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#1 of 16 Old 01-06-2009, 11:44 AM - Thread Starter
 
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I am considering having my dd thick upper lip-tie clipped, but would like to hear from others who have had this done first.

A little background: DD is 4 weeks old. We've had trouble bfing from the beginning. She doesn't seem to have a deep enough latch for my "huge" nipples! We've discovered through "weigh and feeds" that she only transfers about 1/2oz at most for a 30-40 minute nursing session. The only way I can get her to gain weight is to supplement about 10-12 ounces of formula or EBM per day. I have been working on building my supply (fenugreek, mothers milk tea, domperidone), but I don't think she even fully empties my breast when the milk is there.

We did have her tongue-tie clipped last week, and her latch seemed to feel more comfortable at first, but she still isn't transferring milk any better. (I'm skeptical that the ENT didn't clip it enough...)

Questions/Concerns about the surgery:

The ENT said it would have to be done at the hospital with anesthesia (gas and local) due to her age. What are the risks of the anesthesia?

He said that it won't require sutures, but might require a bit of cauterization for bleeding - I guess that's good, right?

I worry that she will reject nursing if she is in pain afterward.

Anyone with firsthand experience with this??
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#2 of 16 Old 01-06-2009, 07:24 PM
 
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I have had experience with the posterior tongue tie clipping, but not the lip clipping. I think adequate pain management in the week afterwards is really important. The baby I saw had a massive tongue-tie clipping done, and his parents were careful to make sure they gave him tylenol regularly for the first few days and he continued to nurse really well.
to you both - I hope nursing improves soon.
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#3 of 16 Old 01-07-2009, 06:13 PM
 
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Originally Posted by binspired View Post

We did have her tongue-tie clipped last week, and her latch seemed to feel more comfortable at first, but she still isn't transferring milk any better. (I'm skeptical that the ENT didn't clip it enough...)
Sorta OT, I've read several accounts now where CST after the clipping really helped. Obviously there's a limit if the ENT didn't clip enough, but CST seems really amazing with stuff like this.

I can't help with the other--my daughter (5yo) has a really thick labial frenulum (I think that's the name when it's from the upper lip around the gum, between the top two front teeth), and I think we will need to have it clipped soon, so her adult teeth can come in straight. Wishing you all the best!
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#4 of 16 Old 01-07-2009, 09:55 PM - Thread Starter
 
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Sorta OT, I've read several accounts now where CST after the clipping really helped. Obviously there's a limit if the ENT didn't clip enough, but CST seems really amazing with stuff like this.

I can't help with the other--my daughter (5yo) has a really thick labial frenulum (I think that's the name when it's from the upper lip around the gum, between the top two front teeth), and I think we will need to have it clipped soon, so her adult teeth can come in straight. Wishing you all the best!

Thanks! I'm obviously hoping that it helps with the breastfeeding, but even if it doesn't, I know that it should help to head off any dental problems later anyway. That's why we've decided to go ahead with the procedure.

Plus, today (in desperation) I tried a bottle for giving her formula (she currently has to have supplements after each nursing) and she had a really hard time latching onto that, too. She had the same problem when I tried a different type of bottle. She can't get good suction. This just reaffirms to me that she needs this procedure done. I'm just crossing my fingers that it helps our bfing relationship!

I know this might sound dumb, but what is CST?
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#5 of 16 Old 01-08-2009, 09:14 PM
 
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I know this might sound dumb, but what is CST?
Cranial-sacral therapy. We have an osteopathic doc that is very experienced, but there are people with different backgrounds who also have training and experience with CST. It's somewhat along the same lines as chiropractic care, in that it's physical manipulation of the body, but it's really, really gentle. Folks have had it help physically draw down the palate--one lady on the Allergies board, her daughter had quite a high palate (the roof of her mouth was arched really high) and within a few sessions, she saw that her daughter's palate was noticeably lower (which makes it easier to suck). I first used it for my daughter's ear infections (she was 6 mos old) and the hardest part is keeping kiddo happy because it's sort of slow. Especially after clipping a tongue tie, it's supposed to help get the mouth working properly.
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#6 of 16 Old 01-11-2009, 04:13 AM
 
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my nephew who is 2 just had the lip and tounge done 2 days ago. he was talking and eating fine that same night. my sister said it cauderization is great as theres no sutures. he has not complained even once of pain and has not even needed tylenol. sounds like a sucess to me!

joyful mama to DS 2-05, open adoption birthmama to DD 5-07: and DS 6-98, and my littlest one 7-09. crazy in love with DH!
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#7 of 16 Old 01-11-2009, 10:49 PM - Thread Starter
 
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Cranial-sacral therapy. We have an osteopathic doc that is very experienced, but there are people with different backgrounds who also have training and experience with CST. It's somewhat along the same lines as chiropractic care, in that it's physical manipulation of the body, but it's really, really gentle. Folks have had it help physically draw down the palate--one lady on the Allergies board, her daughter had quite a high palate (the roof of her mouth was arched really high) and within a few sessions, she saw that her daughter's palate was noticeably lower (which makes it easier to suck). I first used it for my daughter's ear infections (she was 6 mos old) and the hardest part is keeping kiddo happy because it's sort of slow. Especially after clipping a tongue tie, it's supposed to help get the mouth working properly.
We go tomorrow morning for the procedure. I have high expectations for it - I really hope it helps. If it doesn't, maybe we will look into the CST, but I'm not sure we can afford it - especially after the medical bills for this.

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Originally Posted by koalove View Post
my nephew who is 2 just had the lip and tounge done 2 days ago. he was talking and eating fine that same night. my sister said it cauderization is great as theres no sutures. he has not complained even once of pain and has not even needed tylenol. sounds like a sucess to me!
That's reassuring. I hope she isn't in alot of pain and can nurse afterward. Thanks!
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#8 of 16 Old 01-11-2009, 11:16 PM
 
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Shoot, I wish I had seen this earlier!

My son had his lip clipped...he had FIVE frenulums, and the front middle one was very thick. He had no movement of his upper lip at all, and if you tried to flare it, it looked like he had two lips (because half stayed attached to the gumline)

He had general anesthesia because of his underlying syndrome and associated airway malformations. He had to be intubated. He did have stitches becuase of the severity of his tie.

I breastfed him before he awoke fully from the anesthesia, and he latched right on and stayed there for hours. He was very swollen, though! He looked pretty terrible, actually! There was no pain for a while, in fact once he was awake I gave him some toys in his hospital bed and he tried to put one in his mouth! He had heart monitors, IVs, pulse ox, and stayed the night because of his other medical issues.

That first night he was in some pain, we did motrin and tylenol alternating to control it. It took about 3 days for his swelling to go down, but he was eating normally the whole time. He was on solids already by that point, so we avoided anything that we thought might hurt his lip.

It was helpful, he has some movement now, although he has a neurological condition we didn't know the severity of before, and it actually stops him from moving a lot of his upper lip, we thought it was the tie, turns out it's more neurological. But again he had an underlying medical condition your son doesn't have.

Good luck!!

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#9 of 16 Old 01-12-2009, 12:01 AM - Thread Starter
 
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Shoot, I wish I had seen this earlier!

My son had his lip clipped...he had FIVE frenulums, and the front middle one was very thick. He had no movement of his upper lip at all, and if you tried to flare it, it looked like he had two lips (because half stayed attached to the gumline)

He had general anesthesia because of his underlying syndrome and associated airway malformations. He had to be intubated. He did have stitches becuase of the severity of his tie.

I breastfed him before he awoke fully from the anesthesia, and he latched right on and stayed there for hours. He was very swollen, though! He looked pretty terrible, actually! There was no pain for a while, in fact once he was awake I gave him some toys in his hospital bed and he tried to put one in his mouth! He had heart monitors, IVs, pulse ox, and stayed the night because of his other medical issues.

That first night he was in some pain, we did motrin and tylenol alternating to control it. It took about 3 days for his swelling to go down, but he was eating normally the whole time. He was on solids already by that point, so we avoided anything that we thought might hurt his lip.

It was helpful, he has some movement now, although he has a neurological condition we didn't know the severity of before, and it actually stops him from moving a lot of his upper lip, we thought it was the tie, turns out it's more neurological. But again he had an underlying medical condition your son doesn't have.

Good luck!!
Thanks so much! I was beginning to wonder (based on so few responses) if it's a really rare procedure... I hope it is worth putting her through. It turns out that she doesn't have to have general anesthesia - just local. And they claim that she shouldn't need stitches, but I am surprised, because it seems very thick.

I had read that the tongue- and lip-ties can be a sign of an underlying condition - is that true? Should I be looking for other things? I guess I'm just paranoid!
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#10 of 16 Old 01-12-2009, 12:31 AM
 
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Thanks so much! I was beginning to wonder (based on so few responses) if it's a really rare procedure... I hope it is worth putting her through. It turns out that she doesn't have to have general anesthesia - just local. And they claim that she shouldn't need stitches, but I am surprised, because it seems very thick.

I had read that the tongue- and lip-ties can be a sign of an underlying condition - is that true? Should I be looking for other things? I guess I'm just paranoid!
When dd1 had hers clipped it was no local, just rub-on stuff. We swaddled her and I stayed with her. Not sure why they'd want to cauterize...are they used to doing them or is hers very thick? Can you get another opinion? On the tongue tie clip and the lip tie? Maybe call Dr. Coryllos and chat by phone (see tongue tie sticky http://www.mothering.com/discussions...d.php?t=833815).

Why do they think the lip is interfering particularly?

Good luck!
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#11 of 16 Old 01-12-2009, 01:36 PM - Thread Starter
 
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When dd1 had hers clipped it was no local, just rub-on stuff. We swaddled her and I stayed with her. Not sure why they'd want to cauterize...are they used to doing them or is hers very thick? Can you get another opinion? On the tongue tie clip and the lip tie? Maybe call Dr. Coryllos and chat by phone (see tongue tie sticky http://www.mothering.com/discussions...d.php?t=833815).

Why do they think the lip is interfering particularly?

Good luck!
I thought the lip might be interfering, because she cannot seem to get suction on a bottle (the couple times we've tried them) either. The ENT said that hers is quite thick and that it should help, plus it might prevent future dental problems as well.

Well, we had the procedure done this morning, and it didn't seem to phase her any. She's been nursing well, but with little change so far. Of course we might not see change initially due to swelling and soreness. I'm not convinced that it will actually help the nursing and I'm not sure where to go from here. I think I will give it a week or so to see what happens and then consult with Dr. Coryllos if I don't see improvement.

Thanks!
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#12 of 16 Old 01-13-2009, 12:04 PM
 
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I thought the lip might be interfering, because she cannot seem to get suction on a bottle (the couple times we've tried them) either. The ENT said that hers is quite thick and that it should help, plus it might prevent future dental problems as well.

Well, we had the procedure done this morning, and it didn't seem to phase her any. She's been nursing well, but with little change so far. Of course we might not see change initially due to swelling and soreness. I'm not convinced that it will actually help the nursing and I'm not sure where to go from here. I think I will give it a week or so to see what happens and then consult with Dr. Coryllos if I don't see improvement.

Thanks!
Glad it went well and I hope it helps! Nursing problems can be so difficult. In terms of swelling we got almost none since we used arnica 30C right after and as needed for pain.
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#13 of 16 Old 01-13-2009, 05:52 PM
 
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Thanks so much! I was beginning to wonder (based on so few responses) if it's a really rare procedure... I hope it is worth putting her through. It turns out that she doesn't have to have general anesthesia - just local. And they claim that she shouldn't need stitches, but I am surprised, because it seems very thick.

I had read that the tongue- and lip-ties can be a sign of an underlying condition - is that true? Should I be looking for other things? I guess I'm just paranoid!
Tongue and lip ties can sometimes be associated with underlying conditions, as all are craniofacial malformations. But in the absence of any other concerns, you probably shouldn't let yourself focus on that too much. If her feeding issues don't resolve, you might want to have her evaluated by a good LC, chiropractor, craniosacral, etc to see if they notice anything else. I took my son to the only local dentist who clips tongue ties (not because my son had a tongue tie, he didn't, but because he was so familiar with suck issues) and he identified for me some of the palatal issues other specialists were missing. Turns out my son has a type of a cleft palate, yet even the ENT dr had missed it at that point.

BUT, I'll tell you with my son it was fairly obvious from birth that something was going on with him. It just cascaded on us, more and more things were going wrong. It wasn't a simple lip tie, or even just feeding issues.

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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#14 of 16 Old 04-15-2009, 11:26 AM
 
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Does anyone have experience with Posterior Tongue Tie? My Daughter is 3 weeks old and just saw ENT and said she was fine. She has all the symptoms of tongue tie and I do to, low milk supply (I have to supplement and pump constantely) she falls asleep instantly at the breast. I need a doctor in the area who knows what I am talking about. I am in Bedford Mass. Any help please.
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#15 of 16 Old 04-15-2009, 12:24 PM
 
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Does anyone have experience with Posterior Tongue Tie? My Daughter is 3 weeks old and just saw ENT and said she was fine. She has all the symptoms of tongue tie and I do to, low milk supply (I have to supplement and pump constantely) she falls asleep instantly at the breast. I need a doctor in the area who knows what I am talking about. I am in Bedford Mass. Any help please.
Have you seen the Finding Your Tribe section of the board? It's geographically-based (near the top of the page that lists all the forums), and you may want to start a new thread here AND there.

Though hey--you are fairly near Dr. Coryllos, she's the one who wrote the AAP paper on tongue ties and she'd be great at evaluating. I mean--it's probably something of a drive, I think she's in NY or NJ (but I'm in Texas, so it seems close to me ) and giving her office a call to either get a rec or see if you can travel for an appointment would be good. I hear she is excellent.

You may want/need to look into cranial-sacral as well to help the shape of the palate change and help your LO's tongue learn to move in a better way (either before a PTT is addressed, or definitely after it can help I hear).
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#16 of 16 Old 04-17-2009, 10:21 AM
 
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Hi,
I think the lip tie correction is necessary so there are no speech problems later. I would not recommend general anesthesia, but I would not let my LO have it done without a local anesthetic.
Anyone who says babies don't feel pain is out of their mind, they do. Same as with cirucumcision. Who in their right mind can think a baby doesn't experience that as painful? Any doc who does a circ. without a local (which is very safe) is crazy. I do know it is hard to find a doc. who will use a local, but they are out there.
Make sure you LO has a local anesthetic before you let them snip tissue.
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