Tethered Oral Tissues, Torticollis, & Related Conditions: Trendy or Truthful? A Discussion from a Pediatric Physical Therapy Perspective

The current topic that this new physical therapist felt in the dark about when treating infants relates to some trendy topics: tethered oral tissues (TOTS) and reflux. It started with three referrals to treat torticollis and ended with hours of research surrounding the connection between torticollis, plagiocephaly, developmental hip dysplasia (DDH), tongue-tie, and reflux in infants.

In physical therapy school, we learn about torticollis. Torticollis is the tightening of the sternocleidomastoid (SCM) muscle in the front of the neck, which results in the head tilting toward the side of the tight muscle while rotating away from that side (for example, if your child’s right SCM is tight, their head will tilt to the right and rotate to the left). We also learn about torticollis and its relation to plagiocephaly– when your child spends excessive periods of time lying on one side of their head because it is rotated atypically due to torticollis, they will begin to develop head shape changes, including flattening on the side that they are laying on. This is plagiocephaly. They teach us that tightness of the SCM can come from a “packaging” problem in utero, in that there is so little space, babies become cramped and tight. This is also associated with DDH, a condition where the hip socket does not fully cover the head of the femur (the ball that goes into the hip socket), resulting in hip joints that may not be quite as stable as we would like. These are the connections we are taught in school and we learn how to treat them through physical therapy. Great! I am feeling confident heading into these sessions. But wait: these parents all mention that their children have been having issues nursing and have been told they have a tongue-tie (or in one special case, a tongue-, lip-, and cheek-tie!). My new therapist brain is going, “Huh? What is this diagnosis? What does this mean?” Cue the research!

First, it is important to define TOTS, the most common form being tongue-tie. This condition is when the band of tissue connecting the tongue to the floor of the mouth, the upper lip to the gums, or the cheek to the gums– the frenulum– is thickened, and restricts the mobility of one of those structures. For the purposes of this post, and because I find it to be a more common issue among my patients, we will mostly discuss tongue-tie. I found that, historically, tongue-ties were treated as early as the 1600’s, but once formula became a feasible option for families, it seemed to slip under the radar. However, when breastfeeding became popular as a more natural option for mothers and babies again, tongue-tie prevalence also seemed to shoot back up. This seems to explain the perception that tongue-tie diagnoses are a “fad” right now – more mothers are breastfeeding again, and this issue is becoming more noticeable! Babies with restricted tongue mobility may have a difficult time breastfeeding. Common experiences that may indicate a baby has tongue-tie include:

Signs from BabySigns from Mom
Difficulty latching/staying latchedSore/cracked/painful nipples
Baby tiring or being unsettled while feedingLow milk supply
Slow or inadequate weight gainMastitis
“Clicking” while they Feed

Not all of these always indicate a tongue-tie is present, but if you have tried other options for improving breastfeeding, it might be worth chatting with a lactation specialist, a pediatric dentist, and your pediatrician to try to assess your child’s oral mobility. Depending on the extent of restriction, it may be recommended to have the tissue released in a procedure called a frenotomy.

So, what does this “TOTS” business mean to me, a physical therapist? Interestingly, there is often a connection between tongue-ties and torticollis– although there is limited scientific literature or research investigating this relationship, it is thought to be due to several factors. First, midline tension produced in utero that results in the “packaging” issues I mentioned before, can result in the fascial (fascia, being the layer of connective tissue attaching various structures in the body together) and muscle tightness associated both with tongue-tie and torticollis. Second, any restriction in tissue mobility, whether it starts from the tongue or the neck, can result in further restrictions throughout the body. This means that if the tissue holding the tongue is tight, it can often lead to tension down the chain in the neck, resulting in torticollis. Finally, if a tongue-tie is restrictive enough that it begins to block a baby’s airway, they may have to bring their head and neck backward or to either side to open the airway again, thus resulting in a head turning preference. Regardless of what is causing this tension, be it tongue or neck tightness, a physical therapist is going to treat the torticollis as they see it and try to reduce the muscle tightness that presents. However, it may be important to consider whether tongue-tie is a contributing factor to tension, because muscle tightness due to torticollis may need resolved prior to a frenotomy in order for it to be effective. Either way, it is important for a physical therapist and for families to have all of the details regarding the cause of a child’s torticollis and feeding issues. On that note, it’s time to circle back to one of the most important signs that I have begun to recognize in my practice of treating babies: reflux. This indicator of a tongue-tie is relatively common among infants, and even in minor amounts, can be clinically significant. Because a tongue-tie restricts tongue mobility, it only makes sense that feeding (whether from a bottle or breast) would be impaired as well, since they are inadequately swallowing. This then results in air being sucked in which can result in the stomach contents being forced upward through the esophagus and out, in the form of spit-up. It is important to note that, again, tongue-tie may not always be the culprit behind everything, even reflux: children can have traditional acid reflux as we know it, where their stomach contents are extra-acidic and irritate the lining of the stomach and esophagus. Either way, it is important to recognize the symptoms of reflux, because it can result in delays in gross motor skills, and we definitely want to avoid that.

Common signs of reflux include:

  • Poor weight gain
  • Forceful spit-up (projectile vomiting)
  • Irritability following eating
  • Atypical arching pattern with their bodies
  • Gagging/choking
  • Disturbed sleep
  • Significant intolerance to tummy time

All of these things may indicate that a baby is struggling with reflux, and their esophagus and/or stomach are irritated, causing them discomfort. To my physical therapist brain, arching and notable irritability with tummy time are the most important to gross motor skill development because babies are trying to avoid positions that cause them pain, which often results in an inability to participate in typical developmental positions. Hence, the need for skilled physical therapy!

I know this is a lot of information and you may be thinking, “Okay, but what does this mean for my baby?” At the end of the day, I want parents to recognize some of the signs of possible tethered oral tissues, impaired feeding, reflux, plagiocephaly, and torticollis. While physical therapists cannot necessarily help with the medical management of these conditions, we can refer you to appropriate providers to improve the symptoms of reflux and TOTS, an orthotist for a cranial remolding helmet for plagiocephaly, and we can give you some excellent stretches and exercises to improve your infant’s ability to look equally to both sides and progress through all age-expected developmental milestones. If you have any concerns about your child’s development, it is important to bring these up with your pediatrician, and, if you can, actively seek out a physical therapist to determine what level of physical therapy intervention they may benefit from. At worst, you find out your child can benefit from some interventions with us or other providers, and at best, you find out that everything will be okay!

Thank you for reading about my own journey through this world of connections! I was in the same boat as many new (and even experienced) parents, and I wanted to share some of the research I found so that other people could benefit from it, too. Know that wherever you are on your parenting journey, you are doing the absolute best that you can, and your baby is lucky to have you advocating for them! Good luck, and I hope you enjoy physical therapy!