Re: Diagnosing Tongue Tie against the tide

[Guest guest]

" So, I feel like I look pretty dumb -- parents are happy thier

> baby is " normal " and oh dear, where do we go from here! Ann "

Where do we go (?), indeed...I felt the same way Ann, but I'm

working on this ENT group to come around. When I went to that visit

with the parents, I had prepared a folder of Ankyloglossia info: the

ABM's protocol #11, Dr. Coryllos/ Genna article from AAP, and a

couple of studies. When we were leaving, the Dr went to hand it

back to me, and I said " it's for you to keep... " A few days after,

the office called and asked for more business cards

I also sent them Dr. Coryllos phone #, suggesting they consult with

her as needed. ~lee

www.bfmed.org ~protocol 11. Neonatal Ankyloglossia

http://www.aap.org/breastfeeding/8-27%20Newsletter.pdf

[Guest guest]

Hi Ann, I am so overwhelmed with tight frenulums lately. I don't even look right away anymore - I sit and talk first and get a very indept medical history, delivery story and issues involved with breastfeeding. I so do not want to prejudge these babies - but once I get all the puzzle pieces together - I know what I will find. Then I first check the palate - when that is high (some so high at times I almost never get to touch the top ( I always check to make sure its not cleft)), then I try to see what kind of suck I will get then I try to see if the baby will cry and viola theres the tight frenulum underneath. Most times the top lip has a large "nursing blister", labial frenulum.

I am going to assist with two frenotomys tomorrow with Dr Coryllos, this week I have seen four babies (one set of twins) and all of them have tight frenulums. I am amazed - I just want to see one soon without a tight frenulum!!!!! All week I kept hoping "please let this one not be tight". It is such a weird phenomena.

I always explain to the parents that years ago when nursing was the "norm" and and midwifes delivered babies at home. The midwives would keep one nail longer and right after birth would use her nail to cut a tight frenulum, and that was that. But with the advent of bottle feeding this practice became not as necessary. Hence all the speech difficulties.

This is such a new subject in lactation (or is it ?)- I feel I am learning everyday. Again, I am so blessed to be so close to the pioneers in this issue.

Happy Passover and Happy Easter to all !!!!

Donna Kimick

[Guest guest]

Hi Ann, I am so overwhelmed

with tight frenulums lately.

Ann, I know exactly what you mean. When I first started practicing,

I kept finding so many babies who had this weird tongue movement that was

causing severe nipple abrasions. I had a made-up name in my mind

for the problem because I saw the particular cluster of symptoms so

often. But I couldn't find it listed in the way I was seeing it in

any of the textbooks, except vaguely as suck dysfunction or

" disorganized suck. " It seemed that almost 60% of the

babies I saw had this weird tongue movement. But they did not have

the classic tongue-tie with the frenulum attached at the tip so that the

tongue was heart-shaped, so I ruled out ankyloglossia. I sent

countless parents to CST and PT. Sometimes it helped, but a lot of

times it didn't. I was frustrated and the parents were

frustrated. I kept thinking to myself that this was the greatest

mystery in lactation. If we could find a solution to this weird

sucking dysfunction, we would be able to " cure " a large

majority of breastfeeding problems because it was the most common problem

I was seeing.

When I first heard Genna speak (for the life of me I can't remember

where it was -- but ever since I have made a point to hear her every time

she speak every chance I get), I was overwhelmed with joy. HERE was

the answer! She described exactly what I had been seeing -- babies

with Type III and Type IV tongue tie! THIS was the problem and,

even better yet, there was a direct solution!

I believe that understanding this is the greatest step forward in our

field that we have ever had. I think what needs to happen now is

that we need some of these great ankyloglossia researchers to do a study

on Type III and Type IV tongue tie. And I'm hoping that 's new

book has a lot about it that we can share with physicians.

Even though the medical community is behind the ball on this, I really

think they will catch up in time. Every baby we " cure " by

effectively treating the problem will be further proof. It is up to

us, though. We -- each and every lactation consultant who learns

about it -- are the ones that will make this happen. We have to

find or train someone in our area to do the procedure and tell everyone

about the success when it happens. We need to do in-services with

our doctors, clinics, and hospitals. We need to write articles about it

to publish in both parent and professional publications.

If this problem is as prevalent as we think it is, then offering a

solution for it can make breastfeeding possible and enjoyable for a vast

number of mothers who are giving up in frustration now. This could be our

golden key to unlock the barriers that have prevented so many mothers who

really want to breastfeed from being able to so because of pain and poor

weight gain. Working together, but in our separate geographical

locations, we are a powerful entity that can turn the tide on the number

of successful breastfeeding outcomes!

[Guest guest]

I, too, feel that tongue-ties are behind every bush. I sent what I thought was a 3 or 4 to the ENT who has always done the 1s and 2s I've sent to him. Bless his heart, he admitted that he didn't know anything about 3s and 4s, but if I said there was such a thing and it was needed for the baby to be breastfed, he was willing to do it, but only under anesthesia. The parents liked him, but decided to get a second opinion from another ENT (with whom I was unfamiliar). This second ENT phoned me during the appointment to say he didn't see anything wrong, that the baby could bottlefeed. I explained what I knew, particularly what was in the AAP article, what I hear from colleagues, and that breastfeeding was the goal in this case. He said he'd send them to see a feeding team. I don't know what changed his mind, but a few minutes later mother phoned to tell me he decided to give the tongue a little snip and said he was surprised to see some movement. Baby has nursed a little better since, but I have them working with an oral motor specialist to hopefully get things rolling faster. He was 17 days old at the time and only able to latch to one breast a few times daily.

Sure wish I had better pictures and descriptions of 3s and 4s. I'd also like to know more about the labial frenulum - at the upper lip. And the frenulum (what is it called?) that attaches the lower lip. How much play should there be???

Anne Grider, IBCLC

Marietta, GA

[Guest guest]

Dear

Colleagues,

I have had

some experience and success with a Type IV tongue tie, which happened to belong

to my grandson. I don’t know if I shared any of this during

the last 3+ months we’ve been dealing with it, but in short, when my

grandson was born in Honolulu in January (a happy occasion I was thrilled to be

present for), he caused his mom nipple soreness from the very first latch.

So much so that by 6 days of age, dad was going out to buy formula while my dd

was relegated to pumping her exquisitely damaged nipples. Since then, she

has pumped, nursed as much as she could stand, endured yeast, mastitis and low

milk supply and seen an ENT, a CST, a bf-friendly ped and neo and a speech

therapist. WG looked at pictures of his mouth when he was a week

old and said yes, it was a posterior tongue tie. All to no avail.

Where I saw clear signs and symptoms of tongue tie, I didn’t even

see ANY frenulum, so how could that be it?! Nonetheless, it had to be

something, so I consulted and she confirmed it. After my dd took a

hiatus from seeing specialists of every description looking for help and gave

up trying to breastfeed for one day, she took up the cause again and persisted,

contacted the ENT again and persuaded him to contact Dr. Coryllos in NYC.

Last Wednesday, the ENT clipped my grandson’s tongue, instructing my dd

to let him know if it helped. As of yesterday, she is nursing my

almost-4-month-old grandson totally pain-free for the first time since he was

born! All clicking, tongue-humping, pain during nursing,

tongue-fluttering and so on are gone, she says. I have been singing the

praises of WG and Dr. Coryllos for identifying this confounding problem,

pioneering a procedure to fix it (the “Coryllos clip” I’ve

been told some Israeli IBCLC’s that WG presented to have dubbed it),

and educating us. My dd wouldn’t have been able to continue without

the hope of this procedure and finally the relief it brought. The

symptoms she had were severe nipple damage and erosion (the kind I have ONLY

seen with tongue tie), clicking, exquisite nipple pain even in the most perfect

asymmetric latch, dribbling milk when fed a bottle, tongue “tremors”,

tiring out and falling asleep only to wake up hungry frequently. He

developed an upper respiratory infection and a bad cold despite living in Hawaii in the first 3 months of life and receiving mostly breastmilk. He did, though,

receive some formula each day. I did a lot of research and found the

book, Tongue Tie: From confusion to clarity and a Wolf and Glass conference, as

well as their book, to be most helpful, along with the AAP article and WG

herself. I showed pics of my grandson’s tongue to Lynn Wolf, who

asked for copies to use in her presentation because it was a good example of

this kind of tongue restriction. His tongue didn’t have an obvious lingual

frenulum. It didn’t look like there was anything TO clip.

However, there was no real “point” to the tongue, he didn’t stick

it far out, and it looked rounded and flat with the sides “leaflike”

or active. When you looked at it, it looked like the entire tongue was

rooted, from side to side, too far forward in the mouth. The frenulum is

just hidden, submucosal, and easy to clip, if the doctor knows how to do

it. My dd’s ENT was pleasantly surprised at how easy it was to do,

following Dr. Coryllos’ instructions. I am convinced this is almost

a worse problem than the classic tongue tie, for the very reason that it isn’t

easily identified. I would encourage everyone to learn everything you can

about it as I’m betting we’ve lost a fair number of moms because of

this condition. Like others, it seems I’m seeing tongue problems

everywhere! ;-)

Marsha

~~~~~~~~~~~~~~~~~Marsha Glass RN, BSN, IBCLC~~~~~~~~~~~~~~~~~~~~~

Mothers have as powerful an influence over the welfare of future

generations as all other earthly causes combined.

~~~~~~~~~~~~~~~~~~~~~~~~~ S. C. Abbot~~~~~~~~~~~~~~~~~~~~~~~~~

[Guest guest]

What I ask to determine if there might be a family history of tongue- tie is if there are any people in the family who have needed a speech pathologist, had rampant tooth decay, a very high palate, obstructive breathing, snoring, sleep apnea, bed wetting, extensive orthodontia with palate widening. Palmer gave a great session at ILCA in 2005 on Sleep Apnea that helped me put a lot of this together. If everyone was bottlefed without noticeable problems, they may not know if family members were tongue tied.

I saw one mother with several tongue-tied children but she was able to nurse them because her nipples were extremely long and areolas very elastic. Her six year old could stick his tongue out of his mouth, but the tip was rolled under and fastened to the floor of the mouth.

Anne Grider

[Guest guest]

Marsha, What a story, and too bad it happened to your dd, but that makes you an expert doesn't it? I am learning so much about the tongue tie and like this dialogue. So happy to know you've been there and can maybe help someone else with that problem. Joyce Marsha Glass wrote: Dear Colleagues, I have had some experience and success with a Type IV tongue tie, which happened to belong to my grandson. I don’t know if I shared any of this during the last 3+ months we’ve been dealing with it, but in short, when my grandson was born in Honolulu

in January (a happy occasion I was thrilled to be present for), he caused his mom nipple soreness from the very first latch. So much so that by 6 days of age, dad was going out to buy formula while my dd was relegated to pumping her exquisitely damaged nipples. Since then, she has pumped, nursed as much as she could stand, endured yeast, mastitis and low milk supply and seen an ENT, a CST, a bf-friendly ped and neo and a speech therapist. WG looked at pictures of his mouth when he was a week old and said yes, it was a posterior tongue tie. All to no avail. Where I saw clear signs and symptoms of tongue tie, I didn’t even see ANY frenulum, so how could that be it?! Nonetheless, it had to be something, so I consulted and she confirmed it. After my dd took a hiatus from seeing specialists of every description looking for help and gave up trying to breastfeed for one day, she took up the cause again and persisted,

contacted the ENT again and persuaded him to contact Dr. Coryllos in NYC. Last Wednesday, the ENT clipped my grandson’s tongue, instructing my dd to let him know if it helped. As of yesterday, she is nursing my almost-4-month-old grandson totally pain-free for the first time since he was born! All clicking, tongue-humping, pain during nursing, tongue-fluttering and so on are gone, she says. I have been singing the praises of WG and Dr. Coryllos for identifying this confounding problem, pioneering a procedure to fix it (the “Coryllos clip” I’ve been told some Israeli IBCLC’s that WG presented to have dubbed it), and educating us. My dd wouldn’t have been able to continue without the hope of this procedure and finally the relief it brought. The symptoms she had were severe nipple damage and erosion (the kind I have ONLY seen with tongue tie), clicking, exquisite nipple pain even in the most perfect asymmetric latch, dribbling

milk when fed a bottle, tongue “tremors”, tiring out and falling asleep only to wake up hungry frequently. He developed an upper respiratory infection and a bad cold despite living in Hawaii in the first 3 months of life and receiving mostly breastmilk. He did, though, receive some formula each day. I did a lot of research and found the book, Tongue Tie: From confusion to clarity and a Wolf and Glass conference, as well as their book, to be most helpful, along with the AAP article and WG herself. I showed pics of my grandson’s tongue to Lynn Wolf, who asked for copies to use in her presentation because it was a good example of this kind of tongue restriction. His tongue didn’t have an obvious lingual frenulum. It didn’t look like there was anything TO clip. However, there was no real “point” to the tongue, he didn’t stick it far out, and it looked rounded and flat with the sides “leaflike” or active. When you looked at

it, it looked like the entire tongue was rooted, from side to side, too far forward in the mouth. The frenulum is just hidden, submucosal, and easy to clip, if the doctor knows how to do it. My dd’s ENT was pleasantly surprised at how easy it was to do, following Dr. Coryllos’ instructions. I am convinced this is almost a worse problem than the classic tongue tie, for the very reason that it isn’t easily identified. I would encourage everyone to learn everything you can about it as I’m betting we’ve lost a fair number of moms because of this condition. Like others, it seems I’m seeing tongue problems everywhere! ;-) Marsha ~~~~~~~~~~~~~~~~~Marsha Glass RN, BSN, IBCLC~~~~~~~~~~~~~~~~~~~~~ Mothers have as powerful an influence over the welfare of future generations as all other earthly causes combined. ~~~~~~~~~~~~~~~~~~~~~~~~~ S. C. Abbot~~~~~~~~~~~~~~~~~~~~~~~~~ Better than good, Joyce

Love cheap thrills? Enjoy PC-to-Phone calls to 30+ countries for just 2¢/min with Yahoo! Messenger with Voice.

[Guest guest]

Marsha, What a story, and too bad it happened to your dd, but that makes you an expert doesn't it? I am learning so much about the tongue tie and like this dialogue. So happy to know you've been there and can maybe help someone else with that problem. Joyce Marsha Glass wrote: Dear Colleagues, I have had some experience and success with a Type IV tongue tie, which happened to belong to my grandson. I don’t know if I shared any of this during the last 3+ months we’ve been dealing with it, but in short, when my grandson was born in Honolulu

in January (a happy occasion I was thrilled to be present for), he caused his mom nipple soreness from the very first latch. So much so that by 6 days of age, dad was going out to buy formula while my dd was relegated to pumping her exquisitely damaged nipples. Since then, she has pumped, nursed as much as she could stand, endured yeast, mastitis and low milk supply and seen an ENT, a CST, a bf-friendly ped and neo and a speech therapist. WG looked at pictures of his mouth when he was a week old and said yes, it was a posterior tongue tie. All to no avail. Where I saw clear signs and symptoms of tongue tie, I didn’t even see ANY frenulum, so how could that be it?! Nonetheless, it had to be something, so I consulted and she confirmed it. After my dd took a hiatus from seeing specialists of every description looking for help and gave up trying to breastfeed for one day, she took up the cause again and persisted,

contacted the ENT again and persuaded him to contact Dr. Coryllos in NYC. Last Wednesday, the ENT clipped my grandson’s tongue, instructing my dd to let him know if it helped. As of yesterday, she is nursing my almost-4-month-old grandson totally pain-free for the first time since he was born! All clicking, tongue-humping, pain during nursing, tongue-fluttering and so on are gone, she says. I have been singing the praises of WG and Dr. Coryllos for identifying this confounding problem, pioneering a procedure to fix it (the “Coryllos clip” I’ve been told some Israeli IBCLC’s that WG presented to have dubbed it), and educating us. My dd wouldn’t have been able to continue without the hope of this procedure and finally the relief it brought. The symptoms she had were severe nipple damage and erosion (the kind I have ONLY seen with tongue tie), clicking, exquisite nipple pain even in the most perfect asymmetric latch, dribbling

milk when fed a bottle, tongue “tremors”, tiring out and falling asleep only to wake up hungry frequently. He developed an upper respiratory infection and a bad cold despite living in Hawaii in the first 3 months of life and receiving mostly breastmilk. He did, though, receive some formula each day. I did a lot of research and found the book, Tongue Tie: From confusion to clarity and a Wolf and Glass conference, as well as their book, to be most helpful, along with the AAP article and WG herself. I showed pics of my grandson’s tongue to Lynn Wolf, who asked for copies to use in her presentation because it was a good example of this kind of tongue restriction. His tongue didn’t have an obvious lingual frenulum. It didn’t look like there was anything TO clip. However, there was no real “point” to the tongue, he didn’t stick it far out, and it looked rounded and flat with the sides “leaflike” or active. When you looked at

it, it looked like the entire tongue was rooted, from side to side, too far forward in the mouth. The frenulum is just hidden, submucosal, and easy to clip, if the doctor knows how to do it. My dd’s ENT was pleasantly surprised at how easy it was to do, following Dr. Coryllos’ instructions. I am convinced this is almost a worse problem than the classic tongue tie, for the very reason that it isn’t easily identified. I would encourage everyone to learn everything you can about it as I’m betting we’ve lost a fair number of moms because of this condition. Like others, it seems I’m seeing tongue problems everywhere! ;-) Marsha ~~~~~~~~~~~~~~~~~Marsha Glass RN, BSN, IBCLC~~~~~~~~~~~~~~~~~~~~~ Mothers have as powerful an influence over the welfare of future generations as all other earthly causes combined. ~~~~~~~~~~~~~~~~~~~~~~~~~ S. C. Abbot~~~~~~~~~~~~~~~~~~~~~~~~~ Better than good, Joyce

Love cheap thrills? Enjoy PC-to-Phone calls to 30+ countries for just 2¢/min with Yahoo! Messenger with Voice.