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Healing a Tongue Tie

Rehabilitation from tongue tie can take time. For many, true healing requires a team of people to support them at a physical, spiritual and relational level.

The Trauma

For some, one of the hardest things to heal from a tongue tie is the trauma. Between my son’s traumatic birth, the far reaching negative affects of the tongue tie on our life including his hospitalization in the PICU at 7 days of age, and all of the food reactions due to the medical damage and the resulting limited diet that my son and I have been on now for over a year I have had a pretty traumatic introduction to motherhood (I am still pumping breastmilk for him so my diet has been deeply affected as well). At first I didn’t recognize the trauma for what it was but have since been able to identify the trauma as well as some of the triggers. When my son first advanced past gagging on contact with a spoon and started gagging with food in his mouth during occupational therapy I would sometimes have to leave the room because my heart would begin to race and the fear and the panic felt like a wave hitting me out of nowhere. This was in a safe environment under the care of a therapist that helps with feeding and gagging all of the time. This is trauma. Mournful tears welling up uncontrollably just from driving by the hospital where Caleb was born a few weeks before his first birthday is trauma. My son’s first birthday was a particularly hard trigger for me because it is a natural time of reflection on everything that you and your baby experienced together during their first year and the trauma from everything that was taken from us by misguided medical and nutritional care came to head in the weeks leading up to his birthday. I have joked in passing with my son’s occupational therapist that I needed a therapist too…and I actually am getting ready to go visit a Christian counselor to help me even further as I pursue complete healing and rehabilitation in the Lord. I am really thankful that Dr. Ghaheri, an ENT that specializes in tongue tie, speaks to the emotional impact that tongue tie can have on both mothers and babies.

“Mom has an inherent instinct to nourish her child, and a disruption in that desire can have profound psychological impacts.” Dr. Bobby Ghaheri (1)

I can attest to this statement one hundred percent, not only in the context of tongue tie inhibiting the ability to breastfeed but the detrimental affect it has had on my ability to feed my son in general. Our problems transferred from the breast to the bottle and then to solids not just with gagging but picky eating and texture aversions as well. While we have a lot to be thankful for and God has been so good to us, this struggle to do the most basic thing: to nourish my son, certainly has taken a toll on me as a person and on the quality of life that our family experiences. Something as simple as sharing our regular meals together as a family has become a mountain. Praise God that we can say to that mountain move and it will move…and believe me, I am telling that mountain MOVE! in Jesus name and I know it will!

I am supposed to be able to instinctually nourish and care for my baby with my body starting in utero and then at birth with breastmilk and tongue tie has the capacity to attack a mom in this arena (remember not all tongue tied babies have trouble nursing). When a mother is attacked in this way so is her baby, at their most vulnerable time in life and at their most basic instinct at birth, which is to suckle at their mother’s breast for nourishment, as Dr. Ghaheri valiantly points out for infants:

 “I maintain that babies who have difficulty with breastfeeding are actively in distress, similar to the abandoned baby. A basic human function (like parental proximity during sleep OR breastfeeding easily) becomes disrupted, and cortisol levels can rise…It’s time that medical professionals start to look at breastfeeding as an important developmental process rather than a stair step to getting a baby to grow physically…We need to focus on the neurologic and psychiatric well being of infants in addition to their moms. Our current system is failing the dyad from the emotional aspect, and we need to examine what happens as a result of that failure.” Dr. Ghaheri (1)

Taking Off the Trauma

Earlier this year God revealed to me that part of my continued feeding struggle with Caleb was indeed linked to trauma. He showed me that Caleb had a mask of trauma around his mouth and face. I asked God what I should do. He told me “Take it off”. God’s power can do that and He is leading me in the charge to stand against trauma in the name of Jesus and in defense of my son’s well being. A weighty thing about being a mother or a father is that God has given us spiritual authority over our children and with the Holy Spirit residing in me I can be led by God to bless my child and be given power and authority to remove things like trauma from my baby’s face, from his mouth, from his mind and from his heart. Praise the Lord, my GOD is BIGGER.

I also praise the Lord with all my heart that He has provided for Caleb a team of people that respect me, respect my intuition and decisions for my son, and who take tongue tie seriously. As I mentioned in my last two posts, we went through a lot of medical professionals before discovering the tie and while many were truly kind and caring some of them were very degrading. What makes matters worse for many tongue tie mothers is that they face this kind of degradation not only in the doctor’s office but away from it as well, even from people they should be able to trust at their most vulnerable times. I have found that being around people that act from a place of misunderstanding and lack of empathy compounds the trauma I experience and increases the curve for healing. I noticed a few months back that when I leave my son’s Occupational Therapy session that I feel uplifted, positive and happier because just talking to his therapist each week reminds me that I am not alone, she sees what I see. She is so valuable not only for my son’s physical rehabilitation but also for my emotional healing. Surrounding yourself with therapists, medical professionals and people in general that are of the same mind helps to heal trauma. I also thank God for the godly friends that He has given me, friends that love me and who have not dismissed me or my experiences, who have been there for me and even those that God has been so kind to provide that can relate because of their similar experiences. Praise God.

Physical Healing

Healing of course must be supported physically as well. That is where our “dream team” shines. Through both the first and second frenectomy Caleb’s improvements have been aided along by his valuable team of medical professionals that God has assembled for my precious little one. Having an experienced release provider in our same city was a Godsend as well as my son’s physical therapist, occupational therapist (who also is his cranial sacral therapist), and his chiropractor all of whom have helped Caleb to physically be set free from tongue tie. I also thank the Lord for the primary care doctor God provided for Caleb who not only takes his gut health very seriously but who also encouraged me to face my fears and get Caleb’s tongue tie revised when I was having doubts.

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We visited Caleb’s holistic dentist recently for his regular check up and she got really serious when we were talking about Caleb’s occupational therapy. She told me that Caleb’s occupational therapist had changed his life for the better in ways we can’t even begin to imagine and that she is having to regularly work with adults who did not get such early intervention and have suffered a lot of the consequences of an untreated tongue tie, untreated tongue thrust, sleep apnea, etc. I truly agree with Caleb’s dentist. Caleb’s occupational therapist has dedicated herself to the hard work of addressing his ultra-sensitive gag reflexes, his food trauma, his low facial muscle tone, his highly uncoordinated suck-swallow-breathe pattern, tongue thrust and more through occupational and cranial sacral therapy techniques which have been a life-changing blessing.

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Caleb with his Christian chiropractor. 

Caleb didn’t roll until 8 months, just after his frenum was first lasered which included multiple chiropractor visits. He also began climbing the stairs within 24 hours of his first or second chiropractic visit. As mentioned in past posts Caleb felt like a loose noodle immediately after his first frenectomy because of the tightness the restricted oral tissues caused in his body. The tongue muscles stretch surprisingly far into the neck, and tongue tie has a surprising affect on the body via fascia. These muscle and fascia tensions pull on bones and muscles in ways that contribute to imbalance. I do believe that the combination of a frenectomy, physical therapy and chiropractic adjustments are what helped Caleb finally roll at 8 months. He didn’t stay on the ground much longer after that though ’cause he also started walking just a month or so later at an early 9 months 3 weeks! Go Caleb!

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God knew that Caleb needed physical therapy early on and he provided this therapist in Caleb’s life through a special connection. The early intervention has made a huge difference in the quality of Caleb’s life. One of the very first interventions was the introduction of a Nuk pacifier to help him strengthen his facial muscles (Caleb was identified as having low facial muscle tone by both his PT and OT). Caleb could not use a soothie because it so easily fell out of his mouth and if he did manage to keep it in he would swallow so much air from using it that he would scream and scream. The Nuk also helped shape his palate which was identified as being high-arched by the lactation consultant very early-on. Since his tongue had not been in proper contact with his palate in utero the palate formed wrong and the Nuk was able to do what Caleb’s tongue couldn’t do, make full contact. When we finally made it to the release dentist just shy of 8 months he praised the fact that we had been using the Nuk because of it’s help to the palate formation. A person’s palate continues to grow and develop through toddlerhood, a tongue is supposed to play the most vital part in shaping it correctly, that is why so many kids and adults that have tongue tie also have sleep-disordered breathing (apnea) and/or nasal airways. Many of these kids and adults end up having to get nasal surgeries to try to open airways and reduce sinus infections, adenoids removed, use of a CPAP machine at night and more. Caleb’s physical therapist also addressed his torticollis at a very early age and supported the dentist’s frenectomy by supporting proper positioning of the jaw and helping to both address the tone of the tongue base as well as release the tight base of his posterior tongue. The physical therapists also spend a lot of time working on Caleb’s hips because just like “what you get at the lips you get at the hips” is applicable during birth it is true for babies while eating as well. A tight mouth and a tight pelvis go hand in hand. Releasing the pelvis helps release the mouth. Vestibular insecurity was something else that both Caleb’s PT and OT identified and have worked on with him using various swings and physical maneuvers to strengthen him in this area since he was a late roller and also experienced high cortisol levels and fight or flight throughout infancy due to the tongue tie and invasive medical treatments which resulted in traumatic food reactions on top of the choking and gagging etc. that he already experienced from the ties. There is a lot more that both Caleb’s occupational and physical therapists have accomplished for Caleb through early intervention, more than I will ever know I am sure. As one of my son’s physical therapists puts it “the baby’s mouth is the first place a child learns motor skills, and sensory skills. If this is compromised due to positioning problems or timing, or strength problems it can have an impact on further development” (2).

And the Spiritual: Ka-POW! Take that Tongue Tie.

In addition to a team of medical professionals that take me, my son and his tongue tie seriously God also provided for Caleb and I a prayer team that I could turn to for help even when I felt I couldn’t turn to anyone else. I have been at the precipice of hopelessness in our medical or feeding situation, I email this team and within 24 hours, boom God moves. I can never thank God enough for them or their prayers. The prayers from this anointed team have been critically important to Caleb’s healing and victory over all that the enemy has thrown at him already in his first 21 months (Caleb’s guardian angel sure hasn’t been bored, I can say that for sure!). From God healing Caleb’s oxygen saturation issues before things got even more invasive to Him giving one of the member’s a vision of Caleb with Jesus standing over him with His hand on Caleb’s chest, protecting his oxygen and airways before the healing…I should mention I was praying specifically for his oxygen that morning and I hadn’t talked to this member since before Caleb was born and that afternoon she gets a vision and emails me. God is amazing. God has given these prayer team members words of command from God, words of encouragement, all very timely in miraculous ways. I am in complete awe still at these experiences, humbled and so thankful.

Jesus Heals a Tongue Tie

While Jesus may not have healed Caleb’s tongue tie in the same manner that he did for the man in the gospel of Mark…I can truly say Jesus has healed my son’s tongue tie. If it were not for Him I would never have known Caleb was tongue tied to begin with! If it wasn’t for Him I would not have won the Owlet oxygen monitor on Instagram right before Caleb was born, if it was not for him…the list goes on and on (See my post Dayenu for more of the great things God has done for Caleb). The Holy Spirit victoriously led me to find out about a generational birth defect that has gone undetected for almost one hundred years on my mother’s side (See my post Great and Hidden Things). I just thank and Praise the Lord everyday that He is has been there with me through it all, encouraging me, sustaining me and guiding Caleb and I up out of the pit. He was there every time Caleb’s medical grade oxygen alarm went off in the middle of the night, He was there as Caleb continued to not sleep day after day after week and He alone understands the severity of sleep deprivation I was facing as I began to cry out for help only to be misunderstood by multiple people. He was there every time Caleb choked, gagged, or projectile vomited and He is the Cleft in the Rock Who loves me more than life itself. I hide myself in Him. I hide myself in His love for me and in His love for others. He will contend with those that contend with me and HE will save my children. In Jesus’ name, so be it.

“And again, departing from the coasts of Tyre and Sidon, he came unto the sea of Galilee, through the midst of the coasts of Decapolis. And they bring unto him one that was deaf, and had an impediment in his speech; and they beseech him to put his hand upon him. And he took him aside from the multitude, and put his fingers into his ears, and he spit, and touched his tongue; And looking up to heaven, he sighed, and saith unto him, Ephphatha, that is, Be opened. And straightway his ears were opened, and the string of his tongue was loosed, and he spake plain.” Mark 7:31-35

Blessed be the name of the LORD.



Resources:
1. BREASTFEEDING PROBLEMS CAN AFFECT THE EMOTIONAL HEALTH OF MOM AND BABY
https://www.drghaheri.com/blog/2014/11/14/breastfeeding-problems-can-affect-the-emotional-health-of-mom-and-baby-1

2. Considering Breastfeeding/Early Infant Feeding a Developmental Milestone by Karen Adams

3. Tongue-Tied: How a Tiny String Under the Tongue Impacts Nursing, Speech, Feeding, and More by Dr. Richard Baxter
https://www.amazon.com/Tongue-Tied-String-Impacts-Nursing-Feeding/dp/1732508208

4. When Did It Become OK to Stop Listening to Mothers?
https://www.facebook.com/DrGhaheriMD/posts/when-did-it-become-ok-to-stop-listening-to-mothersan-integral-part-of-any-patien/923606461134064/

5. BREASTFEEDING DIFFICULTY AND FAMILY SUPPORT
https://www.drghaheri.com/blog/2014/2/10/breastfeeding-difficulty-and-family-support

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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
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  • 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
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  • 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
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  • 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 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
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  • Tongue Thrust (5)
  • Torticollis
  • Trouble Sleeping/”Baby Won’t Sleep!”
  • Trouble Breathing in Sleep
  • Trouble Swallowing
  • Unable to Breastfeed or use a Conventional Bottle
  • Uneven Head/Plagiocephaly
  • Upper Lip Curling Under or In vs Flanging around Nipple
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  • 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

Resized_20180622_115549

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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Tongue Tie, Travesty & Love

This part 2 in my tongue tie series.

I need to once again make sure God gets mad glory for showing me the great and hidden thing that caused us so much turmoil and damage…the tongue tie, the thing that none of our pediatricians knew! God tore away the veil and showed me something that has been oppressing mothers and babies for generations in my family. Still it is troubling to wonder how it was possible for an OBGYN (which by the way our OB was an answer to another prayer!), postnatal nurses tasked to aide with breastfeeding, a lactation consultant (who was so caring and sweet), four regular pediatricians (one of which was also a certified lactation consultant who in addition to learning symptoms visually examined my damaged breast), ER staff, an intensive care unit pediatrician, a pediatric pulmonologist, wound care staff, therapists who were also really caring for Caleb but one of which we saw every week for feeding, my primary doctor (who I consulted for mastitis and breastfeeding problems), my dentist (who I asked about Caleb’s tongue thrust and who told me his wife had a similar breastfeeding experience and also had to supplement), a pediatric gastroenterologist, an internal medicine allergist, and a pediatric allergist…how could all of these medical professionals have missed Caleb’s tongue and lip tie? Not to mention all of the previous pediatricians and doctors for the family members who came before us (see post Great and Hidden Things)!?

The Travesty

While it is especially important that I reiterate that I do not want even a hint of bitterness or unforgiveness to be in my heart or words, I do feel the need to share the following, again not in anger or slander, but as 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…

Firstly, the historical impact of the formula companies and the shift from midwifery to hospital births both have a lot to do with the devastating gap in knowledge and therefore a great lack in treatment. For decades the influence of the formula industry’s advertising as a viable alternative to mother’s milk resulted in pediatricians automatically referring mothers who experienced feeding difficulties to the bottle, that is if they hadn’t already chose the bottle due to cultural popularity. Even in early 2017, when I reached out to doctors I was never told about Human Milk 4 Human Babies or Eats on Feets, two ways I could have supplemented Caleb with donor breastmilk as I got my supply back up (I went from having chronic clogged ducts and mastitis to almost no milk at at all due to the tongue tie). I was simply told that if tolerated to get Similac Pro-Advance. As I noted in my first tongue tie post, formula companies began directly advertising to pediatricians in the 1940s and then in 1959 began even providing free formula to hospitals and pediatricians as part of their overall marketing strategy…which worked (1,2)! Breastfeeding had to be “saved” through counter movements such as the Nestlé boycott of 1977 (1). Although Caleb had extreme difficulties even with bottle feeding many tied babies are able to thrive with a bottle (not to mention all of the tied babies that can actually breastfeed!), as a result many tongue ties were not caught for decades and the training for how to screen for them became obsolete. At the same time more and more women were convinced that hospital births were safer and they began to entrust their deliveries to OBGYNs who were not trained to check for and cut tongue ties at birth. Historically midwives would cut the tie immediately to allow the newborn infant to suckle. Dr. Richard Baxter shares in his book “Tongue Tied”, that an obstetrician textbook from the 1600s specifically instructs how to check an infant for a tie at birth and if present calls for a surgeon to cut it. (3) Sadly, between the shift toward hospital births, a cultural pushback against all surgeries for a time that started in the 1850s (4) and the aggressive marketing of formula during the last century (1,2) the void in how to check for and treat ties was complete and too many pediatricians, OBGYNs, and both occupational and speech therapists to this day are still not properly trained in the subject of tongue and lip tie in school or fellowship. As a result most modern standards of care do not include a proper, if any, evaluation for tongue tie. An exception is in the country of Brazil where, by law, infants must be evaluated for tongue tie at birth. (5)

Before-the-1940s-tongue

(6)

In addition to the lack of proper education the political hierarchy of the medical system gets in the way too. Dr. Ghaheri, an ENT who specializes in tethered oral tissues, shares that shockingly some hospitals today actually have gag orders on lactation consultants so they cannot tell a mother she and baby are suffering because of a tongue or lip tie (7)! This is incredulous and after having gone through the trauma I went through with my baby down right cruel and dangerously negligent. Primary doctors get offended when a lactation consultant catches the problem and “diagnoses” or even suggests/”refers” to a qualified ENT or dentist instead of letting the doctor do so (who again most likely lacks proper training). Even if the doctor were to make the referral it is important for the referral to be to an experienced release provider, not just any ENT or dentist. One significant marker of experience is the use of a laser or scissors without anesthesia. In the meantime while referrals to a preferred provider are being withheld or missed altogether babies are struggling to swallow, struggling to breathe, driving parents mad with colic and extreme sleep deprivation, being put on formula, prescribed proton pump inhibitors, having feeding tubes installed and being hospitalized for failure to thrive.

It is a travesty.

I have seen first hand these issues and the misdiagnosis my son having a restricted maxillary and lingual frenum from a handful of medical professionals, which led to a tonsil and adenoidectomy at the age of 2:11 because his tonsils and adenoids hypertrophied and caused obstructive sleep apnea, all were initially due to infant reflux which was caused by a restricted frenum and swallowing issues from birth… As an SLP, I was not taught how to accurately diagnose frenum restrictions and the impact even slight restrictions can have on the health and well being of an infant, child, or adult.” -Nicole Archambault Besson, EdS, MS, CCC-SLP (8)

But the damage doesn’t stop there, formula has been proven to create a completely different ecosystem in a baby’s gut with higher populations of pathogenic bacteria (9). Even if formula is not introduced, often times antibiotics or antacids are to address symptoms or conditions that tongue tie contributes to or even causes. These kill good bacteria and lead to candida overgrowth and low stomach acid (10) which also deeply changes the ecosystem of a baby’s gut. Both research and clinical evidence are increasingly linking the imbalance of the gut ecosystem to the development of neurological conditions like anxiety, autism, dyslexia and ADHD (11), to autoimmune conditions like fibromyalgia, lupus and Hashimoto’s (12) and to the development of immune system issues like allergies, asthma and intolerances (13)…and so much more.

Nutrition and Genetics

Sadly in addition to the influences above there seems to be an uptick in the occurrence of tongue tie overall and our diet plays a huge role. Specific vitamins, such as vitamin A, D and K2 are needed for the frenum to release properly in utero, especially vitamin A (14). Dr. Steven Lin recommends a diet high in grass-fed offal, eggs, oily fish and whole fat grass-fed butter or cream, as well as some carrots and spinach for 6 months prior to conception to try to prevent tethered oral tissues from forming in utero (14). Dr. Weston A. Price found that modern diets cause nutritional deficiencies that result in narrow mouths with crowded teeth (15). I wonder if what Dr. Weston A. Price found was actually that modern diets increase the occurrence of tongue tie because narrow mouths with crowded teeth and high palates are symptoms of…tongue tie.

Tongue-Tie-can-cause

(16)

In addition to vitamins A, D and K2, midline defects have also been linked to a deficiency in folate. It is estimated that 40% of the world population has at least one MTHFR variant (17) making them unable to process the synthetic form of folate: folic acid…yes the same folic acid that every OBGYN is trained to make sure moms take in prenatals! I tested myself and Caleb. We are both homozygous MTHFR which is the most severe form of the genetic variation. We cannot assimilate folic acid and it actually clogs up our precious folate receptors…

We, as a society, simply cannot rely on a vitamin pill for nutrition, especially when it comes to the critical nutrition we need for our babies in utero. We cannot rely on a modern diet full of “instant meals” and packaged foods. We need to eat real unprocessed food planted, stored and prepared with ancient methods like anaerobic fermentation. The Great Physician had it right all along. He didn’t create us first and then make us wait 5,000 years before we finally had the technology to build factories to create synthetic vitamins for our pregnant mothers. He gave us bioavailable nutrient dense foods from the beginning to create healthy babies.

Tongue tie has had a detrimental affect (one that we are overcoming in the name of Jesus I should add) on the health of my son, myself and my family members through the resulting recommendations of formula, invasive diagnostics and various “medicine” prescriptions, this on top of the damage from our standard American diet which played a role in it’s formation to begin with! We are made in God’s holy image and how we treat that image and what we feed that image really does matter.

A tiny string under the tongue is a testament to that.

Love or Anger

The implication of a tongue tie that is not caught at birth can be horrific on so many levels for not only quality of life and health, but also simply the ability to survive and thrive. This is in addition to the heartbreak associated with not being able to breastfeed, or the violated feeling that comes from having the micro-biome (the one that I worked so long and hard to pass on through an all natural labor) hit hard by unnecessary antibiotics just seven days later. When our ability to thrive and survive is threatened or when our gut ecosystem suffers we can become bogged down in ways that can directly thwart our God-given destiny (see post Bagworms). In light of all of the damage and trauma that tongue tie can cause it is easy to grow angry or bitter at industries or even certain people…but really there is only one true common enemy throughout—THE enemy. The efforts to convince people to eat processed foods are immense and how about the efforts to convince mothers to not breastfeed their own children which has been going on for centuries, think of the popularity of wet nursing before formula and bottle feeding became all the rage (2).

In his booked called “Love Never Fails” (18), Kenneth Copeland points out that when Jesus’ cousin and close friend John the Baptist was beheaded Jesus withdrew for prayer but was followed by the crowds. During this deeply emotional time the Bible says that Jesus responded with compassion and healed the sick. He didn’t lash out in anger or condemning words toward Herod or just ask the crowds to be leave him alone, instead he ravaged the kingdom of darkness with love and compassion because He knew that the real enemy wasn’t Herod or Herodias, it was Satan. When someone we love is deeply damaged by misguided nutritional or medical advice we can respond with sorrow and anger especially when the trauma is deep or when we are constantly reminded daily of the damage that was done to our child’s body. In the strength of Christ though we can respond in love which allows the true enemy to be stopped in His tracks. When we respond through faith in the love and grace of Christ the enemy can’t find any new footholds to stand on. Loving our enemies requires faith and as I am learning dying to myself. It is one thing to be polite or nice toward someone who openly opposes the truth and gaslights you in a detrimental fashion, but to love them!? However, I have to keep on reminding myself that when I step out in faith that faith forms a shield of protection against the enemy’s fiery darts. If I have learned anything it is that I really need that shield cause those darts are real and they can hurt us or our loved ones really bad. Thank God in Christ we have redemption, RESTORATION, PROTECTION (oh He is our Cleft in the Rock) and ultimately we have VICTORY. He alone can heal and restore. He alone can truly save. After what Caleb and I have gone through I do not want to create a new foothold for the enemy in my heart because of imperfect judgment or anger toward anybody or anything. Even though it certainly is not easy to respond to a slight in love I am seeking to walk in the love of Christ for everyone involved in our health journey, historically or present. In Christ alone are we made whole and restored, in Christ alone we live and breathe. It is He Who holds my head above the waters, no matter how torrential they get. With His mighty right hand He draws me up out of the waves, me and my precious child and He walks out onto those raging waters for us. No amount of anger or bitterness is worth jeopardizing my intimacy or lifeline with Christ. I trust in Him to be perfect in judgment and in provision. He has and He will continue to contend with those that contend with me and to save my children.

… … …

Part of love is compassion and the Lord truly has helped me to have compassion in the sense that much of what The Lord desires for our bodies to manage it’s health is, I’m finding, very different than the practices of conventional western medicine today. There are many well-meaning doctors out there but to evaluate the health of someone in a more holistic manner or to evaluate for tongue tie is not something that they are trained for or often approve of, even by the very medical associations that they receive their certifications and legal protections from. In order to follow the guidance of the Holy Spirit in treating a patient, as it should be, they would have to deviate from standards of care which would essentially mean transforming their practice and identity and removing themselves from the legal and monetary protections of their earthly associations. I listened to several of the speakers during the recent Candida Summit and one of them was Jack Wolfson, a board certified cardiologist (19) that practiced conventionally for years. When he made the leap to integrate holistic medicine with his conventional training it meant leaving the hospital he worked at with guaranteed income from people’s insurance and stepping out in faith by opening a cash pay cardiology clinic. He now sees people from all over the world because there is such a demand for his kind but at the same time so very few (if any other) holistic cardiologists. Another reason I find in my heart compassion is that I now realize that every doctor, every formula company, every manufacturer for vaccines, antacids or pharmaceuticals, every one of them is not only accountable to their medical associations and peers etc…but they are also and ultimately even more-so accountable to God. People made in God’s image are entrusted to their care to try to heal or care for that image to make it healthy and to function optimally for the glory of God. In light of this I realize I am not their judge, they already have a judge who is the original Image Bearer and because, as mentioned, much of what they may be doing is damaging toward that precious image it is with the fear of God that I do have compassion. They too are made in God’s holy image and they too are infinitely precious to God. He is their Judge. He has got this in hand and so we must pray! We must pray for doctors and for the medical community to listen to the Holy Spirit, to the Great Physician. Pray for more awareness and acceptance in the medical community about the horrendous damage that can happen from a tongue tie that is undetected or left intact. Pray for the doctors that are out there trying to educate their peers like Dr. Ghaheri or Dr. Baxter. Pray for our individual protection and freedom from the enemy’s agenda to essentially mutilate the image of God with generation after generation of antibiotics, proton pump inhibitors, misinformed nutrition and more. Too many are listening to another voice, a voice that harms and damages the image of God. Oh how precious is the Lord and His image that we bear, and may He be eternally glorified in our bodies and in our love for one another.

Even in our love for our enemies.

We have the victory. We have Jesus.

40108918_2030108023678132_7386713471259246592_n

(20)

For a list of symptoms and related conditions to tongue tie stay tuned for my next post.

References:
1. A HISTORY OF BABY FORMULA – HOW EMERGENCY BABY FOOD BECAME AN EVERYDAY MEAL FOR BABIES IN AMERICA
HTTP://DOMESTICGEEKGIRL.COM/UNCATEGORIZED/HISTORY-BABY-FORMULA-EMERGENCY-BABY-FOOD-BECAME-EVERYDAY-MEAL-BABIES-AMERICA/
2. A HISTORY OF INFANT FEEDING
HTTPS://WWW.NCBI.NLM.NIH.GOV/PMC/ARTICLECS/PMC2684040/
3. History of Tongue Tie
Baxter, Richard. Tongue Tied, How a Tiny String Under the Tongue Impacts Nursing, Speech, Feeding, and More. Alabama Tongue Tie Center, 2018. Page 5
4. Backlash Against Surgery
Baxter, Richard. Tongue Tied, How a Tiny String Under the Tongue Impacts Nursing, Speech, Feeding, and More. Alabama Tongue Tie Center, 2018. Page 6
5. Brazilian Law for Tongue Tie
Baxter, Richard. Tongue Tied, How a Tiny String Under the Tongue Impacts Nursing, Speech, Feeding, and More. Alabama Tongue Tie Center, 2018. Page 257
6. Dentist sheds light on tongue tie in infants
http://www.ourmilkyway.org/dentist-sheds-light-on-tongue-tie-in-infants/
7. Hospital Gag Orders on Lactation Consultants, Bobby Ghaheri MD
https://www.facebook.com/DrGhaheriMD/posts/357748484386534
8. The Tongue Was Involved, But What Was the Trouble?
https://leader.pubs.asha.org/article.aspx?articleid=2432362
9. The Risks of Not Breastfeeding for Mothers and Infants
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2812877/
10. The Largely Unknown Health Epidemic Affecting Almost ALL Americans
https://bodyecology.com/articles/unknown_health_epidemic.php
https://bodyecology.com/the-body-ecology-diet-book.html
11. Gut and Psychology Syndrome: Natural Treatment for Autism, Dyspraxia, A.D.D., Dyslexia, A.D.H.D., Depression, Schizophrenia
https://www.amazon.com/Psychology-Syndrome-D-D-D-H-D-Schizophrenia/dp/0954852028
12. Ways To Reverse Autoimmune Disease
https://www.amymyersmd.com/lp/ai-webinar-registration
13. What’s Causing Food Allergies?
https://bodyecology.com/articles/whats-causing-food-allergies
14. Webbed Fingers Syndrome: Is Tongue-Tie Linked to Vitamin A Deficiency?
https://www.drstevenlin.com/webbed-fingers-syndrome-tongue-tie-linked-vitamin-a-deficiency/
15. Weston A. Price, DDS
https://www.westonaprice.org/health-topics/nutrition-greats/weston-a-price-dds/
16. Tongue Tie and Crowded Teeth, Misaligned Jaws, Narrow Palates
Baxter, Richard. Tongue Tied, How a Tiny String Under the Tongue Impacts Nursing, Speech, Feeding, and More. Alabama Tongue Tie Center, 2018. Page 195-196
17. Do You Have The Gene Mutation That Affects 40% Of The World?
https://drwillcole.com/what-you-need-to-know-about-the-gene-mutation-that-affects-40-of-the-world/
18. Love Never Fails, Kenneth Copeland
https://www.amazon.com/Love-Never-Fails-10-pamphlets/dp/1575620944
19. Dr. Jack Wolfson
https://www.wolfsonintegrativecardiology.com/about/
20. Bible.com
https://www.bible.com/verse-of-the-day/PSA.91.2/385?version=1

 

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Great and Hidden Things

I desire only for compassion, love and grace toward every medical professional we have worked with. They were each trying their best for Caleb I hope and I do not want even a hint of bitterness, slander, or unforgiveness to be in my heart or words.

The Generations

In 1936 a baby girl was born in Illinois. Baby thankfully was able to breastfeed because unfortunately for her three siblings mother’s milk was deemed to be “poisonous”.

35459148c1305599bd7df49ba561bfd6--glass-baby-bottles-nursery-sets

Baby bottle from the 1930s. (1)

In 1959 the baby girl from Illinois gave birth to her firstborn in Oklahoma, also a girl. She cried continuously and just wouldn’t sleep. Extreme sleep deprivation set in as baby girl began to starve and finally the doctor discovered that mom didn’t have the milk for baby girl to nurse. Since mother had issues with milk production (her 5 following children were put on formula straightaway) no further investigation was made to see if there were any other underlying factors contributing to the infant’s inability to thrive on the breast.

89090293865260abb7284c730f3cd85b

“By 1950 over half of all babies in the U.S. were on evaporated milk”…! (2)

By the 1940s formula companies had successfully influenced pediatricians to recommend their products through direct advertising (3). The widespread decline in breastfeeding culminated with breastfeeding commonly being considered unclean in the 1950s and ’60s. In 1959 formula companies began providing formula to hospitals and pediatricians as part of their marketing strategy in order to gain endorsement. (2After taking a hit from organized efforts to save breastfeeding (such as the Nestlé boycott of 1977), formula companies began directly advertising to the public in 1988. (2,3)

In 1986 the baby girl from Oklahoma had grown and gave birth to her firstborn in New Mexico. This baby girl was able to breastfeed, but she screamed…a LOT. Colic nearly drove her parents mad for 9 grueling months, the entirety of her breastfed experience. When babysat she would refuse to eat even if it were an entire day, screaming and starving herself until mom got back. With solids she would eat and then vomit over and over. This little one had tongue thrust and into adulthood she frequently swallowed water “down the wrong tube” resulting in coughing fits as a result. Worst of all her husband had to frantically do the Heimlich on her during her third trimester because her swallowing issues caused her to start choking on a piece of steak. Thankfully her baby had already flipped during this very scary experience and even more thankfully the Heimlich maneuver worked!

Between the 1980s and 2015 babies continued to be born with everything from needing formula supplementation to help with weight, to colic, to slow eating, gaps between the two top teeth as toddlers, food pickiness, recurring ear infections and ergo recurring antibiotics, ear tubes, speech therapy needs, anxiety, mouth breathing at night, and plenty of orthodontic needs.

Then in 2016 a baby boy was born. He had had jaundice and barely avoided supplementation even with feeding every 2 hours. He was sent home with an SNS by labor and delivery nurses because of the difficulty mom and baby were presenting with nursing. He also presented with low oxygen saturation which landed him in the PICU at just a week old. After 2 rounds of antibiotics this full-term baby was diagnosed with “apnea of prematurity”. He quickly fell asleep on the breast and off the breast his sleeping deteriorated to only a matter of minutes, if he didn’t wake right upon being put down. His mother was sent to wound care by a pediatrician for her torn up breast and was instructed to dress her wounds between feedings…except baby would not even sleep long enough for mom to eat or even go to the bathroom! Mom also had chronic plugged ducts and experienced mastitis twice. Mom did find that lying on her back helped with feedings. In addition to the physical trauma on one breast the other side for mom was always creased after feedings. Baby started having watery green stools in addition to periodic projectile vomiting. Extreme sleep deprivation in both mom and baby began to set in and mom began to become unemotional toward her own baby as he kept on crying and not sleeping. Mom resorted to rocking him for hours on the birth ball. Once asleep he would roll to his side scratching and sucking at the walls of his bassinet. Baby grew animalistic during skin to skin, scratching and grasping at the breast. Finally mom realized that what she was going through was not simply the trenches of new motherhood but rather a form of oppression. The multiple doctor visits already had yielded no help and so mom cried out to God for their deliverance. God helped mom figure out that her baby was cutting off his milk supply by pinching her nipple shut (chomping vs sucking) and to get him enough milk as well as to heal her physical trauma mom stopped nursing altogether at 6 weeks. When she started pumping mom barely produced anything and had to supplement in order to keep up with her baby’s hunger (mom’s low supply gave way to an ample supply with regular pumping). With a satiated tummy baby finally started sleeping but he would choke and audibly struggle to breathe all the while. He also “chirped” in his sleep and even snored and whistled sometimes. The bottle feeding honeymoon was short lived because of huge burps, prolonged screaming, excessive leaking milk out of his mouth and the continued projectile vomiting along with choking and gagging. Baby was diagnosed with a “high arched palate” and put in therapy for feeding. His oxygen, sleeping and feeding problems continued. At around 2 1/2 months mom did find the oxygen improved drastically if he was laid on his tummy, however because of SIDS risk a pediatrician advised she continue to lay him on his back even though his airways were struggling to remain open in this position. Baby was diagnosed with silent reflux which resulted in pediatricians advising for his mattress and changing table to be elevated on one side and he was put on omeprazole. He even received a referral for a medical sleeping wedge. Solids went from exciting to gagging, vomiting and aversions to the spoon or food.

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This special needs bottle was the only bottle Caleb could thrive with, otherwise a dish towel had to be wrapped around his neck to soak up the milk that leaked from his mouth and he would scream for hours. God provided these at a pharmacy. They made a mistake and made me pick-up instead of deliver his first refill of oxygen monitoring supplies and viola there was a basket of these bottles ON CLEARANCE! Praise the Lord.

After a series of swallow-study x-rays, upper gi x-rays, a “fluff-to-make-mom-feel-better- x-ray” and a birth x-ray mom really wanted to try to avoid anymore invasive diagnostics…not to mention all the antibiotics, rx caffeine and omeprazole (a proton pump inhibitor) baby had been put on. God had already protected Caleb by providentially securing his medical grade oxygen monitor which had alerted mom to his choking in his sleep (the post Caleb Gabriel tells how this started with winning an Instagram contest) and from being put under to have a camera stuck down his throat by healing his 02 issues and showing mom about his allergies before the doctors (see post Red Lips). Still, with the continued feeding problems mom knew something was there, something elusive, something that none of the doctors, therapists or the lactation consultant were catching. The doctors seemed to favor the theory of it all being neurological, they had even thought the oxygen saturation issues were too…and neurological problems means generational anesthesia and an MRI after the other invasive diagnostics have ruled things out, including being put under for scopes and then all the x-rays and meds and allergy testing we had already started. Mom knew that this path of medical testing was not working, it was not catching the problem, she knew in her heart it was just damaging her baby further.

The Cry

In May 2017 I shared a photo of Caleb’s tongue thrust with prayer partners and asked them to pray for God to show me what was causing it. On May 26, 2017 a prayer partner for Caleb sent me the same image with Jeremiah 33:3 inscribed upon it. What a prophetic word! image1

God had placed that feeling in my heart that there was a root to the problems. Then I was sent that verse. In July I took these things to the mat and grappled in prayer, asking over and over “Lord please open my eyes and help me see, show me that which is hidden!” I could feel it, there was something there, something in the dark that I could not see!

After months of pediatric specialists, therapists, x-rays, medications and more God did tell me great and hidden things…things that I had not known, that my mother, grandmother and great grandmother had not known…almost a hundred years of not knowing. The suffering had come to a head with Caleb and it took an all-out fight in the spirit realm for the light to shine on that which was hidden, but God did shine the light, and now I see. I cannot thank or praise God enough for delivering Caleb from the damaging circus of medical diagnostics and medications, and for showing me what had wreaked so much oppression in our lives.

The Answer

Finally on July 23, 2017 as I was searching for answers in a Facebook forum another mom mentioned I should look into ankyloglossia. I had already been told by the lactation consultant months prior that Caleb did not have ankyloglossia and Caleb’s feeding therapist had reiterated this stating that Caleb could stick out his tongue so I kind of shrugged it off but politely replied by saying thank you for the suggestion and that I would look into it. I didn’t really intend to make a point of remembering to research it since I felt like the medical professionals we had seen had already evaluated that possibility it for us…But then the Holy Spirit deeply convicted me. I would be lying if I did not keep my word and look into it, and in a timely manner! In order to not be guilty of dishonesty I did a quick Google search that very moment and what I found made my mouth drop – literally. A blog with the symptoms of ankyloglossia that felt like a book about what Caleb and I had gone through.

Tongue Tie

Turns out Caleb was both tongue tied and lip tied! After a few days of research I starting wondering about myself…so I decided to check my tongue in the mirror, I couldn’t believe it, I am also tongue and lip tied! Then I asked my mom to show me her tongue, she is tongue and lip tied! The truth is out, no more tongue tie torture for mothers and babies in my bloodline! With awe and amazement I thank God Who so graciously helped me see. I am so eternally thankful to the Holy Spirit Who kept me at it, He helped me wrestle that answer out of darkness into the Light! Goliath fell in the Name of the Lord God Almighty for David and he can fall for us too in that same Mighty and Holy Name.

To God be the eternal glory, honor and praise. Amen.

Stay tuned for my next post which shares how it was possible for Caleb’s ties to have been missed even though we frequently visited many pediatricians, pediatric specialists, therapists, and more.

Footnote:
To finally get the answer it took an act of staying true to my word to the other mom on Facebook even when I wasn’t motivated to make it a priority. This is interesting because when trying to get pregnant I sought a referral to the only local reproductive endocrinologist on the grounds that I wanted to find the root cause of my infertility. When I got to her office and realized she intended try to get me pregnant with hormone manipulation versus uncovering and fixing the root cause of my hormone imbalance I decided to stay the course (and I am forever thankful for her hard work, night and weekends literally for us!). However, this ended up being dishonesty because I had told the referring doctor that I wanted to find the root cause, even if it meant I had to leave the state to see an in-network provider. I was given a rare referral to an out of network provider. If I had decided to stay true to my word even when tempted not to and search out a doctor that would help me find the root then tongue tie may not have even manifested in my child because of its link to nutrition. Our journey with antibiotics etc. which resulted in Caleb’s gut issues certainly would have been very different because I now know that much of the same opportunistic overgrowth (which is caused by overuse of antibiotics and the poor nutrition provided by the standard american diet) was at the root of my infertility.

References:
1. https://goo.gl/images/iUZNoL
2. A History of Baby Formula – How Emergency Baby Food Became an Everyday Meal For Babies In America
http://domesticgeekgirl.com/uncategorized/history-baby-formula-emergency-baby-food-became-everyday-meal-babies-america/
3. A History of Infant Feeding
https://www.ncbi.nlm.nih.gov/pmc/articlecs/PMC2684040/