Treatment Philosophies

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Often, concerned parents have done a fair bit of research online about their child's struggles before coming into the office for their first appointment,  so they've got some background on the struggles facing their children. 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 our office, they’ve frequently already had discussions with their pediatrician, lactation consultants or other feeding therapists, and possibly pediatric dentists, chiropractors, speech-language pathologists (SLPs), or ear, nose and throat (ENT) doctors. 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 while nursing or prolonged nursing sessions, your baby may nurse every hour through the night or may sleep through the night much earlier and nurse less frequently 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 breast or chest-feeding parent makes and the force with which their 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 milk ejection reflex (also called "letdown") or bottle feedings that are not paced may gain weight at a rapid rate, as they are unable to manage the flow of milk by themselves and they typically end up overeating. On the other hand, this same baby, if the family is feeding them via paced feeds or at a breast/chest 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 and possibly even put on medication . This is dependent on the way in which their TOTs impact their ability to swallow. 

Is my baby tongue, lip, or cheek tied? The answer is that it depends entirely on the nature of your baby's muscular state in combination with the length of the frena that connect these body parts to the gums. Frena are small bands of connective tissue that can sometimes limit mobility of the tissues they're connecting, in which case they're considered "tied." Sometimes folks believe they have ties in their babies but the frena themselves are actually in good working order, and tethered tissues can be the result of muscular tension caused by fetal or birth trauma. This is why it is so important to ensure your baby is assessed head to toe by a qualified IBCLC to ensure that you don't end up subjecting your baby to unnecessary procedures! Many babies arrive at our office having been diagnosed with ties by their pediatrician or IBCLC when there are not actually any ties present, because most providers haven't had sufficient training and experience to be able to tell the difference between ties and muscular tension that inhibits your child's range of motion in their lips, cheeks, or tongue.

With this variability in mind, the following is a commonly accepted (but not exhaustive) list of known TOTs symptoms for the breastfeeding parent and infant: ​

Nursing parent's symptoms 

• Cracked, bleeding or blanching of nipples
• Painful latching 
• Gumming or chewing of the nipples
• Misshapen or compressed nipples after feeding
• Poor or incomplete breast/chest drainage
• Plugged Ducts – Mastitis (present/past/recurring)
• Nipple Thrush or other infection
•  Over / Under supply of breast milk
• Use of a nipple shield to maintain latch or encourage milk transfer

Infant’s Symptoms

• ​Difficulty in achieving a good latch
• Falls to sleep while attempting to nurse
• Slides off/spits out the breast when attempting to latch
• Pain while nursing despite doctors or lactation support saying the latch looks good
• Clicking during sucking and/or loud, gulping swallows
• Coughing, choking or sputtering at the breast
• Lots of spit up- may be happy or unhappy during spitting
• Diagnosis of reflux by a pediatrician, family doctor, or GI doc
• Poor or excessive weight gain
• Short sleep episodes (feeding more often than every 2 hours)
• Disordered Sleep Breathing- apnea, snoring, heavy noisy breathing, or frequent startles to wake
• Unable to keep a pacifier in the infant’s mouth
• Waking up congested in the morning/after naps
• Preferential sleep position (i.e. only upright on chest or in carseat)
• Gagging when attempting to introduce pacifier or solid foods
• Milk leaking out sides of mouth during feedings
• Extreme fussy periods (colic behaviors)
• Lip (“nursing”) blisters
• Open mouth breathing at any time of the day or night

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 tethered oral tissues is constantly changing and is being conducted in a wide variety of various fields of practice. Some research is done in dentistry (pediatric or general dentistry), others in otolaryngology (ENT), and even more in lactation, speech and language pathology (SLP), 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 tethered oral tissues 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 WNY Orofacial, 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 enhance your 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 our piece of that treatment puzzle? 
​We begin by conducting a thorough assessment of your baby’s orofacial 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. Additionally, your baby's lips and cheeks need to work as nature intended if they are going to be able to suck and swallow appropriately. In order for functional suck and swallow to occur, the tongue needs to be able to fill the entire palate, lips need to close easily, and cheeks need to be fully engaged. 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 for tethered lips, tongues, and cheeks. The sheer fact that there are almost 8 billion of us on this planet is a testament to the fact that humans are quite good at surviving despite a plethora of potential pitfalls.
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 Once a thorough assessment has been conducted, you’ll receive an individualized treatment plan including habilitative oral exercises, neuromuscular retraining techniques, massage and stretching exercises to loosen muscular tension, and referrals to the best providers to be part of your child’s treatment team. These providers often include a bodyworker and release provider (if there is a tongue, lip, or cheek tie) at a minimum. Depending on the age of your child, you may also be referred to a Speech and Language Pathologist (SLP) for myofunctional therapy. 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 parents will also get full breast/chest/bottle feeding support while we manage your child's oral function.               

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