One of the most common questions I'm asked, but the most complex to answer, is how do we check for Tethered Oral Tissues (TOTs), and how can we help resolve struggles caused by them?
Often, concerned parents have done a fair bit of research online before coming into the office for their first appointment, so they've got some background on the struggles facing children with tongue. lip, and cheek ties. They may discover along the way that there is a lot of conflicting information between various internet resources, and even from provider to provider. By the time families make it to the Breastfeeding Support Center of WNY, they’ve frequently already had discussions with their pediatrician, other lactation consultants, and possibly pediatric dentists, chiropractors, or ear, nose and throat (ENT) physicians. It is with this in mind that the following has been written, to help make sense of the confusing and conflicting information out there.
What are the signs and symptoms of TOTs? The answer to this question is complex, and for this reason it's easily and frequently misunderstood by parents and providers alike. Sometimes the symptoms can seem to run opposite to one another (i.e. either extreme weight gain or extremely slow gain, choking and sputtering on the breast or prolonged sleep nursing sessions, your baby may nurse every hour through the night or may sleep through the night much earlier than expected). This is because there's more to infant feeding than the baby's ability to suck and swallow- the volume of milk the mother makes and the force with which her letdowns occur greatly influence the trajectory of the nursing relationship. Babies who can not effectively transfer milk from a breast or bottle but who receive milk at a rapid flow, through an overactive letdown on the part of the mother or bottle feedings that are not paced, may gain weight at a rapid rate, as they are unable to manage the flow of milk themselves. On the other hand, this same baby, if the family is feeding them via paced feeds or at a breast that is more typically producing and behaving, might have a great deal of trouble gaining weight. In both of these situations, the baby may or may not be extremely gassy and/or spit up at such a rate that they are diagnosed with acid reflux. This is dependent on the way in which their TOTs impact their ability to swallow.
With this variability in mind, the following is a commonly accepted (but not exhaustive) list of known symptoms for the breastfeeding parent and infant:
What are the signs and symptoms of TOTs? The answer to this question is complex, and for this reason it's easily and frequently misunderstood by parents and providers alike. Sometimes the symptoms can seem to run opposite to one another (i.e. either extreme weight gain or extremely slow gain, choking and sputtering on the breast or prolonged sleep nursing sessions, your baby may nurse every hour through the night or may sleep through the night much earlier than expected). This is because there's more to infant feeding than the baby's ability to suck and swallow- the volume of milk the mother makes and the force with which her letdowns occur greatly influence the trajectory of the nursing relationship. Babies who can not effectively transfer milk from a breast or bottle but who receive milk at a rapid flow, through an overactive letdown on the part of the mother or bottle feedings that are not paced, may gain weight at a rapid rate, as they are unable to manage the flow of milk themselves. On the other hand, this same baby, if the family is feeding them via paced feeds or at a breast that is more typically producing and behaving, might have a great deal of trouble gaining weight. In both of these situations, the baby may or may not be extremely gassy and/or spit up at such a rate that they are diagnosed with acid reflux. This is dependent on the way in which their TOTs impact their ability to swallow.
With this variability in mind, the following is a commonly accepted (but not exhaustive) list of known symptoms for the breastfeeding parent and infant:
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Mother’s symptoms
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Infant’s Symptoms
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Why is there so much discrepancy in knowledge and information between these providers? The short answer is that they haven’t received a thorough foundational education in oral function and the ways in which oral anatomy impacts other bodily processes. Research on ties is constantly changing and is being conducted in a wide variety of various specialties. Some research is done in dentistry (pediatric or general dentistry), others in otolaryngology (ENT), and even more in lactation, speech and language pathology, orthodontics, gastroenterology, immunology, chiropractic, craniosacral therapy, and more. Most providers, if they’re good at what they do and care to practice evidence-based care, will keep up on research done in their own field of study by way of receiving (and hopefully reading) industry journals, or by attending continuing education lectures from their credentialing bodies. The problems inherent in this logical approach when it comes to ties is that since research is done in so many different fields, it is impossible to be able to see a well-rounded view of TOTs and their impacts with blinders on. Accessing that many journals and continuing education from a variety of fields is a huge logistical challenge for even the most well-intentioned provider who is working hard to excel at their job!
So how does this problem get resolved? An interdisciplinary team is the best way to ensure that each piece of the treatment puzzle is as well-trained as possible. Here at the Breastfeeding Support Center, we work very closely with other providers to ensure that we provide the best continuity of care as you go through this process. Oral function is complex, and as it impacts so many parts of the body it’s important that you and your baby have access to the best providers in the area. We work closely with bodyworkers skilled in chiropractic and craniosacral therapy, dentists who provide revisions, dentists who specialize in sleep disorders, TMJ pain, and palatial expansion, applied kinesiologists, and functional nutritionists to help resolve digestive and gut dysfunction that can sometimes result from chronic oral dysfunctions over time. Further, we are willing to work closely with your family doctor or pediatrician to encourage a true continuity of care. We truly treat your child in a holistic way- ensuring their entire bodies are being taken into account rather than fixating on just one part at a time. It is our experience and belief that it is simply not effective to teat any person with blinders on, as last we checked each one of us has a whole body that is quite complex in its operation. As such, it is important to know how one thing can lead to another- the leg bone is connected to the hip bone, so to speak.
What is the IBCLC’s piece of that treatment puzzle? The IBCLC is often the first person to assess your baby when you’re having trouble. We begin by conducting a thorough assessment of your baby’s tongue mobility- their ability to move the tongue in and out of the mouth, from one side to the other, and within the top and bottom of the oral cavity. The ability to move the tongue UP is more important than the ability to move the tongue OUT of the mouth. In order for functional suck and swallow to occur, the tongue needs to be able to fill the entire palate. Movement must not just be present at the tip (anterior) of the tongue, but also at the mid-tongue (posterior), in the area that molars will one day form in your baby’s mouth. Being animals full of ingenuity, human babies can compensate quite effectively. The sheer fact that there are almost 7 billion humans on this planet is a testament to the fact that humans are quite good at surviving despite a plethora of potential pitfalls.
Once a thorough assessment has been conducted, you’ll receive an individualized treatment plan including habilitative oral exercises, neuromuscular retraining techniques, and referrals to the best providers to be part of your child’s treatment team, including a bodyworker and revision provider at a minimum. As your child progresses in their healing, your IBCLC will monitor healing and essentially act as the quarterback, interfacing with the rest of the treatment team, evaluating efficacy of all treatments received and adjusting as needed to ensure your child can reach their full potential as quickly and efficiently as possible. Finally, it goes without saying but we will anyway: all breastfeeding parents will also get full breastfeeding support services while we manage your child's oral function.
So how does this problem get resolved? An interdisciplinary team is the best way to ensure that each piece of the treatment puzzle is as well-trained as possible. Here at the Breastfeeding Support Center, we work very closely with other providers to ensure that we provide the best continuity of care as you go through this process. Oral function is complex, and as it impacts so many parts of the body it’s important that you and your baby have access to the best providers in the area. We work closely with bodyworkers skilled in chiropractic and craniosacral therapy, dentists who provide revisions, dentists who specialize in sleep disorders, TMJ pain, and palatial expansion, applied kinesiologists, and functional nutritionists to help resolve digestive and gut dysfunction that can sometimes result from chronic oral dysfunctions over time. Further, we are willing to work closely with your family doctor or pediatrician to encourage a true continuity of care. We truly treat your child in a holistic way- ensuring their entire bodies are being taken into account rather than fixating on just one part at a time. It is our experience and belief that it is simply not effective to teat any person with blinders on, as last we checked each one of us has a whole body that is quite complex in its operation. As such, it is important to know how one thing can lead to another- the leg bone is connected to the hip bone, so to speak.
What is the IBCLC’s piece of that treatment puzzle? The IBCLC is often the first person to assess your baby when you’re having trouble. We begin by conducting a thorough assessment of your baby’s tongue mobility- their ability to move the tongue in and out of the mouth, from one side to the other, and within the top and bottom of the oral cavity. The ability to move the tongue UP is more important than the ability to move the tongue OUT of the mouth. In order for functional suck and swallow to occur, the tongue needs to be able to fill the entire palate. Movement must not just be present at the tip (anterior) of the tongue, but also at the mid-tongue (posterior), in the area that molars will one day form in your baby’s mouth. Being animals full of ingenuity, human babies can compensate quite effectively. The sheer fact that there are almost 7 billion humans on this planet is a testament to the fact that humans are quite good at surviving despite a plethora of potential pitfalls.
Once a thorough assessment has been conducted, you’ll receive an individualized treatment plan including habilitative oral exercises, neuromuscular retraining techniques, and referrals to the best providers to be part of your child’s treatment team, including a bodyworker and revision provider at a minimum. As your child progresses in their healing, your IBCLC will monitor healing and essentially act as the quarterback, interfacing with the rest of the treatment team, evaluating efficacy of all treatments received and adjusting as needed to ensure your child can reach their full potential as quickly and efficiently as possible. Finally, it goes without saying but we will anyway: all breastfeeding parents will also get full breastfeeding support services while we manage your child's oral function.