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Tongue Tie and Lip Tie Symptoms in Babies, Kids and Adults

This post is part 3 in my series on tongue tie.

This post is dedicated to all of the mom’s and babies out there that have suffered because of tongue tie. Whether your baby is 4 weeks old, 4  years old or 45 years old I pray that this blog will be a liberator for you and your child. I also would like to dedicate this in memorial to all of the babies that have starved because of tongue tie, choked in their sleep and never woke up because of tongue tie, or all the children and adults that have choked on foods and were never able to regurgitate. Also, to all of the children that have been deeply and adversely affected by recurring rounds of antibiotics because of tongue tie. May the Lord show you great and hidden things, just like he did for Caleb and I so we can all be set free in Jesus’ name.

To learn more on how to prevent tongue tie to begin with please see Dr. Steven Lin’s article “Webbed Fingers Syndrome: Is Tongue-Tie Linked to Vitamin A Deficiency?” (27).

I do not want even a hint of bitterness, slander, or unforgiveness to be in my heart or words as I share information about medical professionals and industries, but rather a warning that will hopefully protect someone else’s life and well being. I seek to hide myself in Christ’s compassion, love and grace toward every person…

Who to Ask for Help

Please read my post called Tongue Tie, Travesty & Love to learn why any doctor, therapist, and even many a lactation consultant cannot, simply via their title, be a reliable source for recognizing a tongue tie. Many are truly kind and trying to do their best, but because of many historical and political factors a large percentage of ties get missed or dismissed. Thankfully the tide does seem to slowly be shifting but it must be accelerated by proactive parents. When looking for a therapist look for one that is certified in TOTS (tethered oral tissues) or one listed on the Ankyloglossia Bodyworkers Website, and most importantly learn how to spot ties yourself. If you discover that you or your child is tied it is also important to advocate for a preferred provider to perform the frenectomy, for a list of preferred pediatric providers click here (1), for adults please visit the Tongue Tied Adults Support Group on Facebook for referrals.

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A HUGE red flag to be aware of is if your provider fails to do an examination of your baby with their head on the examiner’s lap with baby’s legs facing away from the examiner’s body as pictured. Incredibly, even with our large scope of symptoms, Caleb was never examined like this until we met with a TOTS certified Occupational Therapist at 7 1/2 months postpartum and then again here, a week later, with the qualified release provider.


The Confusion

The high rate of tongue ties that have gone undetected or outright ignored and dismissed over the last century is stunning. In addition to the lack of proper tongue tie education across medical professions, including lactation consultants, speech language pathologists, occupational therapists, pediatricians, and OBYGNs (see my post Tongue Tie, Travesty & Love for details), the presentation of a tongue tie varies from person to person increasing the likelihood of it going undetected even with plenty of symptoms presenting at once. This varied presentation is based on factors such as the shape of the mouth, shape and size of the breast/nipple, the size of airways, and in light of these factors how one compensates. In fact there are many people who can compensate well as an infant or otherwise, for example I was able to nurse and I don’t have a lisp or appear to have speech issues but I apparently compensate to say the letter “S”. There can also be a delay in symptom presentation, for some babies tongue tie symptoms don’t present until about 2 weeks after birth (31), for others that compensate well enough to nurse their symptoms and further complications, such as recurring ear infections and swollen adenoids may not begin right away but can arise well into toddlerhood or even childhood. Just because a tongue tie is not causing noticeable symptoms at the very moment does not mean it will not give way to even further complications or symptoms later on in life.

In addition to the presentation variance, some symptoms can appear to be caused by something else. For example, excessive or projectile vomiting after eating could be due to a food allergy or intolerance, but it can also be caused by a dysfunctional suck, swallow, breathe pattern where a baby is forced to gulp while struggling to breathe. Our release provider told me that for a tongue tied baby a normal flow of breastmilk can feel like a bucket of water being poured down their throat. Another example is low oxygen saturation, which can also be caused by an infection which is why Caleb was given two rounds of broad spectrum antibiotics at just 7 days of age, if his tie had been caught by the lactation consultant, any of the pediatricians we saw, or the numerous nurses who tried to aide with breastfeeding during his first week of life then his gut ecosystem would have been spared this assault. The spinal tap fluids that were cultured showed no infection but at that point the antibiotics had already been administered.

It was not an infection, it was a midline birth defect.

Most, if not all, of our symptoms were tongue tie at the beginning but as the antibiotics, caffeine, commercial formula, excessive x-ray radiation, vaccinations, and proton pump inhibitors collectively took their toll on my newborn’s body systems other issues arose. For us this medical damage resulted in dysbiosis of the gut ecosystem and immune system, resulting in many food allergies and intolerances which just further confused our symptom picture. Unfortunately, due to chronic overuse of antibiotics over the last 75 years or so coupled with the standard American diet (SAD) most babies born in the U.S. today inherit various levels of imbalance already for their gut ecosystem even without the barrage of antibiotics that Caleb experienced as a newborn. Depending on the extant of the inherited dysbiosis this imbalance can cause things like reflux, colic (30), eczema and food allergies even in babies without antibiotic exposure. Unfortunately dysbiosis can be exasperated in babies and children via c-section, use of formula (especially if exclusive), proton pump inhibitors, and antibiotics, the latter three are very common with tied babies.

Now finally, on to the symptoms:

Symptoms in the Breastfeeding Mom

  • Breastfeeding Symptoms:
    • Cracked, Bleeding, Ripped, and/or Blistered Nipples
    • Creased/Flattened/Blanched Nipple during Feeds
    • Engorged Breasts
    • Extended use of Nipple Shield (3)
    • Low Milk Supply
      Supply is low due to baby not emptying breast so mom’s body adjusts.
    • Mastitis, especially recurring
    • Milk Drying Prematurely
    • Pain while Nursing
    • Thrush
    • Traumatized Nipples
    • Use of an SNS without a true low supply or low glandular tissue. (3)
      While not all tongue tied babies have trouble breastfeeding, these symptoms are HUGE RED FLAGS that a tongue tie is present. 
  • Other Feeding Symptoms:
  • Mother’s Intuition Tells Her Something is Wrong
    Mother’s have God-given intuition for their children, even first time moms. I have been in multiple situations where my intuition was so red-hot that I absolutely just KNEW what was going on and still experienced the degrading insult of being blown off as an “over-anxious mom”, as a mom who had unrealistic expectations for a “perfect baby”,  or “just a new mom” by health care professionals and others…only for the truth to come out that I was right. When a mother’s intuition is not respected her baby can suffer.
  • Other Physical Symptoms
    • Extreme Sleep Deprivation
  • Psychological Symptoms:
  • Words or Phrases Tied Moms Say that are Red Flags
    • “How on earth is it possible to have more than one child?
    • “How on earth could I take care of my other child if I had one?”
    • Moms with other children might voice their concerns about how their other children are being neglected cause the baby is taking so much of her time and attention and that she doesn’t even have time to feed her other kids.
    • “I can’t imagine having another baby after this.”
    • “I just have to get through this.”
    • “I never want to have children again.”
    • “My baby won’t sleep”
    • “Someday I will sleep again.”
    • They may joke about never having time to bathe or meet their own basic hygiene needs.
    • They may also hint at being beyond the point of exhaustion.
    • “Just trying to survive”
    • “Just trying to make it another day”
    • They may even hint at resenting their current situation.
      Paying attention to what a new mom says instead of dismissing her is important. These things can be blown off simply as a new mom who didn’t know what she was getting herself into (“not mom material”) or as PPD but they are flags, big red flags and often times that difficult baby is a tongue tied baby.

TONGUE & LIP TIE SYMPTOMS IN BABY

  • Apnea
    Indicated by snoring and other sleep sounds like whistling, low oxygen saturation and trouble breathing especially when sleeping on back
  • Body Stiffness
    Tight shoulders with arms that stick out instead of resting in front of baby. Caleb felt so light in my arms, like a noodle, right after his first frenotomy. 
  • Bottle Nipple Colapses
  • Car seat Intolerance: Hates it/Trouble Breathing in it/Reflux Problems
    I hated the car seat too ’cause my baby struggled to breathe in it with low oxygen alarms on his medical grade pulse oximeter going off while I drove.
  • Chapped Lips and Dry Skin
    20161215_001749
  • Cheek Dimpling while breastfeeding (3)
  • Chewing/Chomping/Biting on Nipple
  • “Chirping”/”Barking”/”Squeaking” (Stridor) in Sleep from a Floppy Larynx (Laryngmalatia) or Floppy Esophagus.
    These conditions are not specifically a symptom but are conditions that frequently accompany a tie.
  • Choking in Sleep
    Caleb would audibly choke and struggle to breathe in his sleep. There are two vivid instances where I awoke to my newborn’s oxygen alarm going off for an extended period of time to hear him audibly choking on his back and it did not stop until I picked him up. I truly believe his oxygen monitor saved his life.
  • Clicking or Smacking Noise while Nursing or Bottle Feeding
  • Colic
  • Congested Nose
  • Coughing and Choking while Eating or Drinking
  • Cupped Tongue while Crying
    20180622_121522
  • Dehydration
  • Difficulty Latching
  • “Difficult Baby”/Unhappy Baby/Unsettled
  • Dimples
    Not always, but could indicate buckle ties.
  • Dysfunctional Swallow Pattern
  • Ear Infections
  • Excessive Drooling
  • Excessive Hiccups
  • Excessive Loss of Weight Post Birth
  • Excessive Swallowed Air
  • Exclusively Nurses even as an older Baby or Toddler
  • Extended Nursing Sessions
  • Extended Sleeping then Extended Cluster Feeding
  • Failure to Thrive
  • Falling Asleep at the Breast or Bottle, “Sleepy/Lazy Nurser”
  • Feeding Tubes Required
  • Frequent Nursing
  • Frustrated at Breast or with Bottle/”Combat Nursing”
    Arching Back, Popping off to Scream
  • Gap between Top Front Teeth
    Indicative of lip tie.
  • Gagging on Solids
  • Gassy
  • Gasping for Air while Nursing or Bottle Feeding
  • Green, Watery Poop
    Tied babies that are not able to compensate well at the breast often only get the fore-milk before they tire out which causes the green water poop and the mother’s engorgement and/or a drop in milk supply.
  • Grunting During and After Eating, “Grunting Baby Syndrome”
  • High-Arched Palate/ “Bubble Palate”
    When the tongue does not come in proper contact with the palate in utero the palate forms into a “bubble” and can create narrow nasal airways as well as preventing baby from creating the proper vacuum in order to suckle correctly. This can lead to leaking milk out of the corners of baby’s mouth, dysfunctional suck/swallow/breathe pattern with choking and gagging etc., and swallowed air. Caleb would pop one of my nipples up into his palate instead of drawing it back far enough, and chomp on it to try to get milk, this caused the top side of the crease to be bigger than the bottom and the top half was shaped like his palate. The other nipple just got really physically traumatized.
  • Huge Burps, “Like a Man”
  • Hungry Baby, Even if Just Ate
  • Jaundice in Newborn
    20161212_190641
  • Lethargy
  • Lip Blister(s)
  • Milk Drains out of Mouth Corners
  • Milk Coming out of Nose
  • Milk Tongue
    Palate is supposed to come in contact with tongue to help clean it, otherwise tongue can turn white even with absence of thrush.
  • Mouth Breathing
  • Paci Falls out of Mouth Easily or can only use Nuk/flat Paci
  • “Pallor”-like lips with Red Outline (3)
  • Picky Eating
  • Pocketing Foods along Gumline
    Common with buckle ties.
  • Poor/Slow Weight Gain
  • Prolonged Puree Preference
  • Projectile Vomiting
  • Reflux (4)
  • Refuses the Bottle
  • Refuses to Latch
  • Refuses Solids
  • Refuses Sleep
  • Restless Sleep
  • Shallow Latch
  • Silent Reflux (4)
  • Sleep Deprivation
  • Slides on and off Nipple/Poor Suction
  • Slow Eaters, Long-winded “chewers”
  • Snacking Around the Clock/Grazing
  • Special Needs Bottle Required
  • Spits up Often
  • “Standy-Uppy” Baby
    Prefers extension of body, may even over-extend creating a concave arch with back. 
  • Starvation
    The article “15 Signs the Baby is Starving” (25) helped save Caleb’s life.
  • Stick-Like Limbs/Stick-Baby
  • Syringe Feeding Required
  • Tongue Indent
    20180622_121622
  • Tongue Thrust (5)
  • Torticollis
  • Trouble Sleeping/”Baby Won’t Sleep!”
  • Trouble Breathing in Sleep
  • Trouble Swallowing
  • Unable to Latch
  • Unable to Breastfeed
  • Unable to use a Conventional Bottle
  • Uneven Head/Plagiocephaly
  • Upper Lip Curling Under or In vs Flanging around Nipple
    16389058_1374738502548424_679970891_o
  • Vomiting after Bottle Feeding or Nursing
  • Vomiting Solids
  • Weak Suck

Remember that every tied baby will present differently. Some will have a wide array of the listed symptoms while others may just be gassy with restless sleep.


Symptoms and Related Conditions In Kids & Adults

  • Apnea/Sleep-Disordered Breathing
  • Arthritis (26) 
    Tongue ties can cause a forward head posture which can be a contributing factor to arthritis. Arthritis also has a strong link to dysbiosis (leaky gut) as the root cause (29).
  • ADHD or ADD
    81% of kids with ADD or ADHD have Sleep-Disordered Breathing which is often largely or in-part caused by tongue tie. Symptoms can largely or wholly be rooted in sleep-disordered breathing caused in part by the tie. (8) Leaky gut can also contribute to these symptoms.
  • Bedwetting
    Caused by sleep-disordered breathing which trigger a fight of flight response when oxygen deprivation sets in so brain takes oxygen from muscles in bladder. (9)
  • Bladder Issues
  • Bruxism (Teeth Grinding)
    Can also be a symptom of parasites.
  • Bubble/High-Arched Palate
  • Cavities
  • Chin Wrinkling when Swallowing (10)
  • Chronic Migraines
  • Clenching
  • Clicking Jaw
  • Crooked and/or Crowded Teeth
    Dr. Weston A. Price linked narrow jaws and crowded teeth to nutritional deficiencies. The same links have been made between nutrition and tongue tie. (27) (28)
  • Crusty Lips
  • Cupid’s Bow Dimple (horizontal line while smiling)
  • Difficulty Keeping Mouth Free of Cavitation
    Tongue tie often leads to open mouth postures or breathing and swallowing compensations that negatively affect the oral microbiome.
  • Dowager’s Hump
  • Drooling in Sleep/Open Mouth Posture
  • Dry Mouth/Xerostomia (11)
  • Ear Infections
    “Ear infections are not uncommon in children with lingual frenulum restrictions, as tongue-ties can result in swallow patterns that don’t adequately ventilate eustachian tubes to support optimal middle ear functioning.” (12) Ear infections are also rooted in dysbiosis of the ears, nose and throat biome.
  • Facial Asymmetry (13)
  • Facial Pain
  • Flaccid Lower Lip, Rolled Out Upper Lip (14)
  • Flattened Cheeks (15)
  • Forked tongue
  • Forward Head Posture (17)
  • Frequent Choking on Liquids/Swallowing Down the Wrong Tube
  • Food getting trapped in the palate, gumline or cheeks
  • Gum Disease
  • Gummy Smile (16)
  • Halitosis (Bad Breathe)
    Dysbiosis of the oral microbiome and an unsupportive diet can also contribute.
  • Headaches and Migraines
  • Herniated Discs
  • High-Strung, Anxious
    Dysbiosis is often a contributing factor for this as well.
  • Lips Straining with Flattening (18)
  • Lisp
  • Long-Face Syndrome
  • Long-Winded Chewing
  • Low Volume Speech
  • More than one Swallow per Bite
  • Mouth Breathing (19)
  • Mumbling
  • Narrow or Misaligned Jaws
  • Narrow Arch/Palate
  • Needs to Drink a Liquid to Swallow Solids
  • Night Terrors (8)
    Sleep-disordered breathing caused by the tie can result in terrors. Night terrors are also linked to gut dysbiosis.
  • Nose-Lip Angle Greater Than 110 Degrees (20)
  • ODD
    Symptoms can largely or wholly be rooted in sleep-disordered breathing caused in part by the tie. (8) Leaky gut can also contribute to these symptoms.
  • Overbite
  • Open Bite
  • Orthodontic Relapse (21)
  • Orthognathic Surgery Relapse (22)
  • Painful or Difficult to Open Mouth Wide
  • Pain in Neck, Back and/or Face
  • Pain while Kissing
  • Picky Eater/Limited Food Choices
  • Poor Ability to French kiss
  • Recessed Chin or Jaw (23)
  • Reflux (4)
  • Restless Sleep/Tossing and Turning/Frequent Waking
  • Scoliosis
    Tongue tie can pull C5 forward and push it against the thyroid creating both mild scoliosis and an affect on the thyroid’s function.
  • Sinus Issues
    Narrow airways are a huge factor. Sinusitis is largely rooted in dysbiosis.
  • Smiles Funky (due to lip tie)
  • Smiling with Tongue between Teeth
  • Speech Therapy Needs
  • Speech Difficulty when Talking Fast or when Tired
  • Swallowing Partially Chewed Food/Gulping Food (24)
  • Swollen Tonsils and Adenoids
  • TMJ
  • Tired Jaw from Chewing
  • Tori (bone growth) on Palate or Under Tongue
    24059394_1687760634579541_5919394516344412830_o
  • Trouble Swallowing Foods
  • Tooth and/or Gum Decay
    Ties contribute. Dysbiosis of the oral microbiome and an unsupportive diet are also at the root.
  • Torticollis
  • Underbite

Again, remember that an adult or child with a tie will most likely not present with every single symptom listed and some people will present with more than others. A tongue tie release can be life-changing for an adult, child and their family.


13340316_585552468272800_1849251115927848883_o

“In my experience, the type of tie does not correlate to severity. Restriction is restriction, and as you can see in the picture, each tie looks different.” Dr. Mikel Newman

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Caleb’s Tongue Tie

20180622_121048

Caleb’s Lip Tie

My Tongue Tie

My Mom’s Tongue Tie and Lip Tie Dimple

After Care

We had reattachment after the first frenotomy. I am definitely a supporter of stretches as much as I hate them. One thing that really helped me take the plunge into revision (apart from the painful continuation of feeding difficulties into toddlerhood) was realizing that as a daughter of God it is part of my heritage in Christ to be able to bless my son with my hands. I have blessing in Christ and I can share that with Caleb. I would pray before stretches and ask God to guide my hands and to bless my son. I also have a God-given right and destiny as a mother to nourish my child with my breast and with my hands so I can claim these things in prayer as we advance into freedom.

The best aftercare video for babies that I have found is posted below. Stretches for kids and adults are different of course and information can be found online and through a myofunctional therapist (myofunctional therapy is very important for kids and adults who release their tie). For babies and toddlers I also recommend reading Dr. Ghaheri’s aftercare article. I read in an article and also saw a mom share online that her provider recommends stretching once a month for a year post frenotomy to keep the new frenum stretchy and to minimize scar tissue.

1. Preferred Provider List
https://www.tt-lt-support-network.com/providers.html
2. Tongue Tie Adults Facebook Group
https://www.facebook.com/groups/1494393564165999/
3. Cheek Dimpling, Pallor-Like Lips, Extended Use of Nipple Shield, Having to Bottle Feed, Use of an SNS
https://www.facebook.com/DrGhaheriMD/photos/a.451553228339392.1073741829.329432813884768/867902883371089/?type=3&theater
4. Tongue/Lip Ties and Their Relation to Infant Reflux
http://www.infantreflux.org/tonguelip-tie/
5. Tongue Thrust
https://www.facebook.com/DrGhaheriMD/photos/a.451553228339392.1073741829.329432813884768/852823774879000/?type=3&theater
6. Postpartum Depression
https://www.drghaheri.com/blog/2014/11/14/breastfeeding-problems-can-affect-the-emotional-health-of-mom-and-baby-1
7. Accentuated Cupid’s Bow Upper Lip
http://shwethadental.com/index.php/articles/127-effects-of-mouth-breathing
8. ADHD and ODD link to Sleep Breathing Disorder and Tongue Tie:
https://www.youtube.com/watch?v=Sk5qsmRyVcE&app=desktop
9. Bedwetting, night terrors and sleep breathing disorders:
https://m.facebook.com/story.php?story_fbid=930197510436465&id=102679193188305
10. http://www.buteykochildren.com/mouth_breathing_and_facial_development.php
11. Dry Mouth
http://www.medicalnewstoday.com/articles/187640.php
12. Ear Infections
https://leader.pubs.asha.org/article.aspx?articleid=2432362#.Veed9E5eV2M
13. Facial Asymmetry
http://www.fasttraxortho.com/Mouthbreathing.pdf
14. Flaccid Lower Lip, Rolled Out Upper Lip
http://orofacialmyology.com/files/LIP_INCOMPETENCE.pdf
15. Flattened Cheeks (15)
http://facefocused.com/helping-kids-avoid-braces/what-is-proper-rest-oral-posture/
16. Gummy Smile (16)
http://www.besthealthmag.ca/best-you/oral-health/what-to-know-if-youre-a-mouth-breather#M4tQ1huyVqsD5fze.97
17. http://www.besthealthmag.ca/best-you/oral-health/what-to-know-if-youre-a-mouth-breather#M4tQ1huyVqsD5fze.97
18. http://www.buteykochildren.com/mouth_breathing_and_facial_development.php
19. Mouth Breathing
http://queenofdentalhygiene.blogspot.com/2014/07/breathing-not-everyone-is-doing-it-right.html
20. Nose-Lip Angle Greater Than 110 Degrees
http://facefocused.com/helping-kids-avoid-braces/what-is-proper-rest-oral-posture/
21. Orthodontic Relapse
http://www.fasttraxortho.com/Mouthbreathing.pdf
22. Orthognathic Surgery Relapse
http://www.fasttraxortho.com/Mouthbreathing.pdf
23. Recessed Chin or Jaw
http://www.buteykochildren.com/mouth_breathing_and_facial_development.php
24. Swallowing Partially Chewed Food/Gulping Food
http://www.nosebreathe.com/mouthbreathing.html
25. 15 Signs the Baby is Starving
https://www.babygaga.com/15-signs-the-baby-is-starving/
26. Arthritis
http://www.mouthmattersbook.com/2013/12/08/facial-meltdown-if-a-form-in-nature-isnt-beautiful-something-is-wrong/plagiocephalyplagiocephaly
27. Webbed Fingers Syndrome: Is Tongue-Tie Linked to Vitamin A Deficiency?
https://www.drstevenlin.com/webbed-fingers-syndrome-tongue-tie-linked-vitamin-a-deficiency/
28. Weston A. Price, DDS
https://www.westonaprice.org/health-topics/nutrition-greats/weston-a-price-dds/
29. https://www.theatlantic.com/health/archive/2015/01/joint-pain-from-the-gut/383772/
30. Infant Colic Represents Gut Inflammation and Dysbiosis
https://www.jpeds.com/article/S0022-3476(18)30947-8/pdf
31. Considering Breastfeeding/Early Infant Feeding a Developmental Milestone by Karen Adams
32. Ankyloglossia Bodyworkers Provider List http://www.ankyloglossiabodyworkers.com/provider-list.html

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