What We Have Learned From Our Tongue Tied Babies
By Beverly Morgan IBCLC, FILCA
“it is so much better over the entire life span to have ties revised. The tongue being up in the roof of his/her mouth helps make the nice wide palate and even more important - nice, big airway so he/she doesn't become a mouth breather/snorer - which leads to so many health issues. Not to mention potential dental issues; the ability to eat nutritious food to fuel the body and brain. I could go on and on. I didn't learn all this til my son was 16, and I now understand my mom's problems; reflux, headaches, sinus problems, tooth decay.” Peggy Hinkle IBCLC
Parents and the professionals working with breastfeeding infants learned that even "little" ties are not harmless. If you have a great big knot in a shoe string tying your feet together it is no worse for the movement of your feet if the knots are big or small. The restrictions for movement are there. If the knots leave more room for movement the problems are more subtle. The pressure produced by the restrictions of ties cause adaptations to the body over time. Sometimes the changes are subtle like teeth grinding, sometimes much more disruptive such a migraine headaches. As an IBCLC one of the first questions parents asked when learning their infant had mouth restrictions was "What are the long-term issues if we don't do it now?" That set me on the path of exploring long-term effects of untreated tongue ties. During my journey I found I was not alone in my search for answers and that I had untreated mouth ties. Today IBCLCs, OTs myofunctional therapists, dentists, ENTs, doulas, midwives and other health professionals and parents keep in touch daily through electronic media. Along the way many parents who discovered their child was tongue tied realized they were tongue tied too. Many of the professionals who thought they were learning to help their clients found they were helping their own families as they discovered hidden mouth ties that formerly would not have been recognized.
In the not so distant past, compensations were seen as cures. Speech issues could be "fixed" by teaching compensations. Breastfeeding issues could be fixed by weaning or pumping human milk into bottles or teaching mother how to compensate for baby's difficulties. Dental issues, people assumed, were “cured” by braces, but why a retainer was used to "keep" the corrections was generally not questioned. Lip ties have been released as part of the process for braces but the effect on function has not been fully appreciated and were only fixed when a child was "old enough" for braces.
Many of the adults who have shared here are a part of the Tongue Tied Babies Support Group, a Facebook page for parents and professionals with an interest in improving long-term function for infants with tongue, lip and cheek ties. They are all eager to share what they have learned.
In the not so distant past, compensations were seen as cures. Speech issues could be "fixed" by teaching compensations. Breastfeeding issues could be fixed by weaning or pumping human milk into bottles or teaching mother how to compensate for baby's difficulties. Dental issues, people assumed, were “cured” by braces, but why a retainer was used to "keep" the corrections was generally not questioned. Lip ties have been released as part of the process for braces but the effect on function has not been fully appreciated and were only fixed when a child was "old enough" for braces.
Many of the adults who have shared here are a part of the Tongue Tied Babies Support Group, a Facebook page for parents and professionals with an interest in improving long-term function for infants with tongue, lip and cheek ties. They are all eager to share what they have learned.
You don't know what you don't know. Del Smith
What We Have Learned From Each Other
Why We Decided to Release Our Ties
Follow-up in Melissa Bentley: “I was a small baby, not on the growth chart, always a picky eater. I have had lots of cavities and recession on my back teeth. My main concern with my tongue tie is that I have a hard time swallowing. I couldn’t swallow meat as a kid, and I used to chew it for forever, and then spit it out. I learned that if I cut up meat into tiny bites, I could get them down. I had to teach myself how to swallow pills, and it is still hard. Food and pills or vitamins frequently get stuck in the back of my throat and I have to have something to drink to wash it down. I just thought I couldn’t swallow. I never thought about why I couldn’t swallow."
"My toddler nursed fine, but when we went to start him on solids, he just spit everything out. He wouldn't ever swallow anything. After 3 months of trying to get him to eat in anyway we could think of, and it not working, we went to speech therapy for 3 months and taught him how to swallow, and overcome his "oral defensiveness". I never understood why he would spit everything out, but we got him eating most of the time. He still gags on food frequently and spits things out if he can't swallow them. Now I realize that he got his tongue from his mommy.."
Kristina Gentry: "I had my daughter's posterior tongue tie released at 5 months after I re-lactated (I diagnosed it myself) and will be doing my sons'. Only when discovering my children’s' did I discover my own and realize that it is most likely the reason for many of my issues. I had braces taken off over 2 years ago because my small mouth is crowded with big teeth and I think I have a high palate. They had to use a palate expander to make more room for my teeth to straighten. I recently had to go to a massage therapist due to tightness in my shoulders, neck, and back. My hips were actually twisted making my one leg shorter than the other lol I've suffered with TMJ not even really knowing it and now migraines. I also noticed when I talk I get really drooly and hard to understand. I even have scar-like tissue on the underside of my tongue from it scraping on my bottom teeth. I'm going to put myself through the release first to show my boys it's okay."
Michele Izzo: "My son had his ties revised 6 months ago at 7 weeks old and this is when I started putting the pieces together that I am also tied. I am 35 years old. My mother could not breast feed me longer than 6 excruciating weeks with cracked bleeding nipples. As an adult, I get frequent headaches and occasional migraines. I grind my teeth and clench very hard all night, and even during the daytime. My bottom front teeth are turned inwards. I have some trouble swallowing and cannot stick out my tongue very far, when I try my frenulum hurts. I cannot touch the roof of my mouth when my mouth is open more than about an inch. The main symptoms I am hoping will go away are the teeth grinding/clenching and the headaches. I also have lots of tension/pain in my neck, shoulders, and upper back that I hope will ease up. I do plan to do CST and chiro before and after."
Del Smith: "My symptoms: up until 12 months or so ago I would have said none (I certainly now understand "you don't know what you don't know"). However I now link at least the following possibly to my untreated tongue tie (TT). It will be interesting to see the changes.
Heidi Friedlander: I am a RN and yesterday I got my Upper Lip Tie (ULT) Frenulem and Tongue tie cut.. I also will be getting my lower or bottom jaw cut. As I look back I can see symptoms that pointed to my restrictions. ·
Maggie May Payne: "My young adult son has a tongue tie. We have known about the tie since he was 3years old but back on the day it was 'just a breastfeeding and dental issue'. He now has sleep apnea and major digestive issues. He is not overweight. He is underweight. At present he is 6'2" and 106#. His brother is 6'4" and reached that height at 22. I think my PTT (Posterior Tongue Tie) son will probably meet or beat that height but will remain underweight until the revision". It took a while to convince him to have the revision done. I have convinced him and now am in the process of convincing the insurance to cover the revision. Then I have to find a provider to do it. If all else fails I may take him to Washington State to the ENT of his friend. His 20 year old friend just had his revised and has been amazed at the changes he's felt. His friend said.'Take your hand and place your fore finger and thumb under your chin and down each side of your jaw on the soft part. Push up and swallow. This is what it felt like being PTT . I didn't even know it was hard to swallow and breathe until the TT was gone.' He made his Mom and me cry! We were both horrified as we had both known our children were PTT but had believed the pediatric dentists that it wasn't a big deal. :("
Kelli Bottolfson-Brown: I'm still working on convincing my 23 year old to have his ties released. Symptoms I am concerned with are apnea, choking, slurred speech, headaches, TMJ pain. He's afraid the procedure will hurt. As if the headaches don’t.
Liz Langthorn: I had mine done to reduce my migraines. It has not been perfect as I still have other triggers but very improved. The muscles hurt the most the first few days and then the sites hurt/stung. It took about two weeks of pain management with it. I still have more things to work on like TMJ but well worth it so far. I don't think I clench nearly as much as I did. I definitely don't catch myself doing it as much.
Elizabeth Fitzpatrick: I had mine done 2 weeks ago (2014). I am 60 years of age. The main positive for me is that I was able to lift my tongue up an extra 1.5 cms and able to get my toothbrush around my lower teeth much easier. As a child I had to wear a brace at night to push my front teeth forward. I also had a gap in my front teeth it has since been filled in by my dentist. I can also remember having a stutter as a young child and refusing to do any front of class speaking due to anxiety about my diction. My mother mentioned that it was painful to breastfeed me. She was an amazing woman and fed me till 12 months of age. I decided to have it done as swallowing the juice that comes from eating a piece of fruit was causing me to cough a lot as the juice would try to go down into my lungs. I have not been aware of coughing while eating fruit since having the frenotomy by laser.
Ana Spencer: I had my tongue tie released. I'm 29. I have TMJ,. I only found out that I had TT (Tongue Tie) with my son's TT, and is clearly the source of my pain (even it's not a severe TT) I wish that the provider had cut it more, but I think I will do it again later, it's so much easier than I thought. The problem is the only provider that does it by laser is so far away, 10 hours, or a 2h flight. But I improved already a lot!
Jamee Steele Diver: “My parents knew I was tied. I had a class 2, severely restricted tie. No other ties. I had tongue thrust, open bite, horrible sleep, and lots of cavities. I need constant bodywork and adjustments. I learned about ties after getting my son revised. I spoke to the provider about mine, and then finally got around to revising this past December. I am 32. It was a complete revision. I think it grew back, not actually reattached. The same provider re lasered it in February. It's still trying to grow back, but I'm in OMT now so that is keeping it stretched I think along with some tissue supportive supplements A few weeks later Jamee adds, “ I have had major success! My tongue is fabulous now! I had tongue thrust, open bite, horrible sleep, lots of cavities, need constant bodywork and adjustments.”
Beverly Theresa Durocher Morgan: As an IBCLC one of the first questions parents asked when mouth ties are discovered in their newborns is, "What are the long-term issues if we don't get it released?" That set me on the path of trying to find the answers. As I learned more I realized that from infant hood I fit the profile of an adult with untreated mouth ties. From not crawling but scooting in a sitting position to upright walking, to early ear infections and sore throat, sluggish bowels to late bladder control. As I grew the problems changed. After being called Beverly Beaver for a few weeks when my adult teeth came in, I worked real hard to compensate and bring my lips together, so I was not a total mouth breather when awake, but still my lips did not have the tone they should and my jaws did not line up well for my lips to close well. This mount breathing lead to diseased tonsils and early removal of tonsils and contributed to tooth decay and inflamed gums with deep pockets, The receding chin caused by the pull of the tie contributed to malocclusion and inflamed gums with deep pockets. The high arched palate common with tongue tie resulted of a small dental arch for the teeth causing tooth removals (mostly of decayed teeth) and gagging with mouth x-rays. Later still the strong now-painful pull on my thigh muscles that caused me to skip the crawling stage caused me to have knee pain, limping and hips constantly pulled out of alignment and poor balance, knee pain, swollen ankles. My front teeth were pulling forward and becoming crowded even though I had lost teeth in the back of my mouth. I was 67 years old when I realized I was tongue and lip tied, there was no question that I would have the restrictions released as soon as possible. The problems change as the compensations change and the body ages, One of my ongoing expenses which has mounted each year has been for body work of various kinds and dental visits every 3 months for over a decade which still did not keep deep pockets from forming healthy or save my teeth that were removed shortly before I realized I was tongue tied because of exposed roots from gum recession. Since the release my hips stay in alignment and my balance is good. As a person ages, poor balance can take away a person’s independence and health. The deep pockets and inflamed gums drastically improved in the first 2 months and the teeth that were crowding over each other in the front are beginning to normalize. As I get further away from the release I am spending less time and money on bodywork and dental care.
Stacie Ruiz Bingham: After we figured out Ezra our baby had a tongue tie (tt,) we looked at all our other kids and noticed our oldest also had a tie, although he nursed beautifully until the age of 4. We chose to have it revised in September 2013 when he was 14 years old to hopefully stop the pulling on his teeth. I just put this together of his extension before, and then. Last I looked, it didn't feel like a big enough change for me but I just took a pic of him. What I can see is, the space between his teeth used to go all the way to the gum, and now they have rotated slightly closer to each other. For more information, plus a link to the full story of his issues and the procedure/recovery. Go to Frenotomy in a Teen Stacie Ruiz Bingham http://www.staciebingham.com/.../04/frenotomy-in-a-teen.html P.S. I have looked in my mouth, I do have a PTT, and I want to get it lasered.
"My toddler nursed fine, but when we went to start him on solids, he just spit everything out. He wouldn't ever swallow anything. After 3 months of trying to get him to eat in anyway we could think of, and it not working, we went to speech therapy for 3 months and taught him how to swallow, and overcome his "oral defensiveness". I never understood why he would spit everything out, but we got him eating most of the time. He still gags on food frequently and spits things out if he can't swallow them. Now I realize that he got his tongue from his mommy.."
Kristina Gentry: "I had my daughter's posterior tongue tie released at 5 months after I re-lactated (I diagnosed it myself) and will be doing my sons'. Only when discovering my children’s' did I discover my own and realize that it is most likely the reason for many of my issues. I had braces taken off over 2 years ago because my small mouth is crowded with big teeth and I think I have a high palate. They had to use a palate expander to make more room for my teeth to straighten. I recently had to go to a massage therapist due to tightness in my shoulders, neck, and back. My hips were actually twisted making my one leg shorter than the other lol I've suffered with TMJ not even really knowing it and now migraines. I also noticed when I talk I get really drooly and hard to understand. I even have scar-like tissue on the underside of my tongue from it scraping on my bottom teeth. I'm going to put myself through the release first to show my boys it's okay."
Michele Izzo: "My son had his ties revised 6 months ago at 7 weeks old and this is when I started putting the pieces together that I am also tied. I am 35 years old. My mother could not breast feed me longer than 6 excruciating weeks with cracked bleeding nipples. As an adult, I get frequent headaches and occasional migraines. I grind my teeth and clench very hard all night, and even during the daytime. My bottom front teeth are turned inwards. I have some trouble swallowing and cannot stick out my tongue very far, when I try my frenulum hurts. I cannot touch the roof of my mouth when my mouth is open more than about an inch. The main symptoms I am hoping will go away are the teeth grinding/clenching and the headaches. I also have lots of tension/pain in my neck, shoulders, and upper back that I hope will ease up. I do plan to do CST and chiro before and after."
Del Smith: "My symptoms: up until 12 months or so ago I would have said none (I certainly now understand "you don't know what you don't know"). However I now link at least the following possibly to my untreated tongue tie (TT). It will be interesting to see the changes.
- I have a high palate,
- Respiratory issues as a kid,
- Blood noses,
- Reflux/indigestion - investigated, concluded absolutely no cause!
- Gut - not constipation but certainly not normal.
- Gagging/choking,
- Neck posture - causing stiff muscles, tension and may in fact be a causal factor with alignment issues. Clumsy as a child and even as an adult if running.
- Snoring,
- Hiccups,
- Abundance of saliva,
- Jaw/teeth,
- Open mouth,
- Tongue flat at rest, - this has improved with CST but then my jaw joint aches and jaw/tongue moves back to my comfortable within a week.
- Overdeveloped muscles on the front side of my neck (I've always been self-conscious of a very strong double chin),
- Fury white tongue,
- Bad breath,
- Crooked lower teeth,
- (top crowding as a child, had a couple of top teeth removed),
- Damage/soreness underside tongue grazing on lower teeth,
- Unable to clean around mouth/teeth enough with tongue, especially top teeth, I am forever picking food out of top lip and teeth, I vacuum food from them.
- Swallowing not comfortable, has to be purposeful,
- Tinnitus,
Heidi Friedlander: I am a RN and yesterday I got my Upper Lip Tie (ULT) Frenulem and Tongue tie cut.. I also will be getting my lower or bottom jaw cut. As I look back I can see symptoms that pointed to my restrictions. ·
- I could not play reeded instrument. I settled for the Flute for 8 years but was never really good
- I had horrible Buck Teeth-horrible...
- I had to have 2 adult teeth removed to pull back my over bite.
- I wore braces but no one diagnosed me with ties...as I come from a small town of less than 1000 people so not many options growing up etc. My overbite went back because I did not get my ties fixed.
- My lower teeth are crooked again from the tie pulling and I have recessed chin ·
- I could never eat ice cream cones and never stick my tongue out and am exhausted talking for longer than an hour. ·
- Oral Sex is painful after 5 minutes but try to pull through for my partner’s sake ...and I often would choke...Sorry for TMI but for the sake of science ...here ya go!
- I badly, badly have saliva overload because I can't use my tongue properly to swallow at the dentist and they constantly have to use the thing to suction and as a child my dentist would get mad at me
- I have cavities on upper teeth and stain on front teeth (they are fixed now) ·
- As a child my baby teeth all had stains on them from carries because my tongue could not clean them or reach and my frenulems held in carries. ·
- My nipples from my son's tongue tie are shredded still. I am still lactating as supply was never an issue but mastitis was x 3. My nipples are both half off on top left of right nipple and top right of left nipple.
Maggie May Payne: "My young adult son has a tongue tie. We have known about the tie since he was 3years old but back on the day it was 'just a breastfeeding and dental issue'. He now has sleep apnea and major digestive issues. He is not overweight. He is underweight. At present he is 6'2" and 106#. His brother is 6'4" and reached that height at 22. I think my PTT (Posterior Tongue Tie) son will probably meet or beat that height but will remain underweight until the revision". It took a while to convince him to have the revision done. I have convinced him and now am in the process of convincing the insurance to cover the revision. Then I have to find a provider to do it. If all else fails I may take him to Washington State to the ENT of his friend. His 20 year old friend just had his revised and has been amazed at the changes he's felt. His friend said.'Take your hand and place your fore finger and thumb under your chin and down each side of your jaw on the soft part. Push up and swallow. This is what it felt like being PTT . I didn't even know it was hard to swallow and breathe until the TT was gone.' He made his Mom and me cry! We were both horrified as we had both known our children were PTT but had believed the pediatric dentists that it wasn't a big deal. :("
Kelli Bottolfson-Brown: I'm still working on convincing my 23 year old to have his ties released. Symptoms I am concerned with are apnea, choking, slurred speech, headaches, TMJ pain. He's afraid the procedure will hurt. As if the headaches don’t.
Liz Langthorn: I had mine done to reduce my migraines. It has not been perfect as I still have other triggers but very improved. The muscles hurt the most the first few days and then the sites hurt/stung. It took about two weeks of pain management with it. I still have more things to work on like TMJ but well worth it so far. I don't think I clench nearly as much as I did. I definitely don't catch myself doing it as much.
Elizabeth Fitzpatrick: I had mine done 2 weeks ago (2014). I am 60 years of age. The main positive for me is that I was able to lift my tongue up an extra 1.5 cms and able to get my toothbrush around my lower teeth much easier. As a child I had to wear a brace at night to push my front teeth forward. I also had a gap in my front teeth it has since been filled in by my dentist. I can also remember having a stutter as a young child and refusing to do any front of class speaking due to anxiety about my diction. My mother mentioned that it was painful to breastfeed me. She was an amazing woman and fed me till 12 months of age. I decided to have it done as swallowing the juice that comes from eating a piece of fruit was causing me to cough a lot as the juice would try to go down into my lungs. I have not been aware of coughing while eating fruit since having the frenotomy by laser.
Ana Spencer: I had my tongue tie released. I'm 29. I have TMJ,. I only found out that I had TT (Tongue Tie) with my son's TT, and is clearly the source of my pain (even it's not a severe TT) I wish that the provider had cut it more, but I think I will do it again later, it's so much easier than I thought. The problem is the only provider that does it by laser is so far away, 10 hours, or a 2h flight. But I improved already a lot!
Jamee Steele Diver: “My parents knew I was tied. I had a class 2, severely restricted tie. No other ties. I had tongue thrust, open bite, horrible sleep, and lots of cavities. I need constant bodywork and adjustments. I learned about ties after getting my son revised. I spoke to the provider about mine, and then finally got around to revising this past December. I am 32. It was a complete revision. I think it grew back, not actually reattached. The same provider re lasered it in February. It's still trying to grow back, but I'm in OMT now so that is keeping it stretched I think along with some tissue supportive supplements A few weeks later Jamee adds, “ I have had major success! My tongue is fabulous now! I had tongue thrust, open bite, horrible sleep, lots of cavities, need constant bodywork and adjustments.”
Beverly Theresa Durocher Morgan: As an IBCLC one of the first questions parents asked when mouth ties are discovered in their newborns is, "What are the long-term issues if we don't get it released?" That set me on the path of trying to find the answers. As I learned more I realized that from infant hood I fit the profile of an adult with untreated mouth ties. From not crawling but scooting in a sitting position to upright walking, to early ear infections and sore throat, sluggish bowels to late bladder control. As I grew the problems changed. After being called Beverly Beaver for a few weeks when my adult teeth came in, I worked real hard to compensate and bring my lips together, so I was not a total mouth breather when awake, but still my lips did not have the tone they should and my jaws did not line up well for my lips to close well. This mount breathing lead to diseased tonsils and early removal of tonsils and contributed to tooth decay and inflamed gums with deep pockets, The receding chin caused by the pull of the tie contributed to malocclusion and inflamed gums with deep pockets. The high arched palate common with tongue tie resulted of a small dental arch for the teeth causing tooth removals (mostly of decayed teeth) and gagging with mouth x-rays. Later still the strong now-painful pull on my thigh muscles that caused me to skip the crawling stage caused me to have knee pain, limping and hips constantly pulled out of alignment and poor balance, knee pain, swollen ankles. My front teeth were pulling forward and becoming crowded even though I had lost teeth in the back of my mouth. I was 67 years old when I realized I was tongue and lip tied, there was no question that I would have the restrictions released as soon as possible. The problems change as the compensations change and the body ages, One of my ongoing expenses which has mounted each year has been for body work of various kinds and dental visits every 3 months for over a decade which still did not keep deep pockets from forming healthy or save my teeth that were removed shortly before I realized I was tongue tied because of exposed roots from gum recession. Since the release my hips stay in alignment and my balance is good. As a person ages, poor balance can take away a person’s independence and health. The deep pockets and inflamed gums drastically improved in the first 2 months and the teeth that were crowding over each other in the front are beginning to normalize. As I get further away from the release I am spending less time and money on bodywork and dental care.
Stacie Ruiz Bingham: After we figured out Ezra our baby had a tongue tie (tt,) we looked at all our other kids and noticed our oldest also had a tie, although he nursed beautifully until the age of 4. We chose to have it revised in September 2013 when he was 14 years old to hopefully stop the pulling on his teeth. I just put this together of his extension before, and then. Last I looked, it didn't feel like a big enough change for me but I just took a pic of him. What I can see is, the space between his teeth used to go all the way to the gum, and now they have rotated slightly closer to each other. For more information, plus a link to the full story of his issues and the procedure/recovery. Go to Frenotomy in a Teen Stacie Ruiz Bingham http://www.staciebingham.com/.../04/frenotomy-in-a-teen.html P.S. I have looked in my mouth, I do have a PTT, and I want to get it lasered.