What are TOTs? Oral Dysfunction?
What are TOTs? What is Oral Dysfunction?
TOTs (tethered oral tissues) can include ties of the tongue, (upper) lip, and even buccal (cheek) tissues. This is when the frenulums are short and/or thick and limit movement of tongue, lips, or cheeks. A full functional assessment is required to fully determine the functional limitations of a “tie” rather than just an anatomical assessment based on observed traits, as we all have frenulums, they are only considered “tied” if they limit function.
TOTs typically have a genetic link (TBX22) and there is some correlational research indicating that prenatal folic acid supplementation and fortification can increase risk of TOTs. Folic acid has been shown to decrease rates of Spina Bifida and other neural tube defects since it’s introduction to foods in 1998, which has been a promising outcome to fortification. Folic acid is the synthetic version of folate - both are vitamin B9, though folate can be found in whole foods such as leafy greens, eggs, and citrus fruits. Folic acid is typically used to fortify wheat and grain products, though some people may have a hard time synthesizing/utilizing folic acid may need folate in order to absorb and utilize vitamin B9. There has also been an 834% increase in the diagnosis of tongue tie from 1997 to 2012, though we are unsure of exactly why - whether that is due to more information and awareness, increased rates of breastfeeding, or some other influence.
Some symptoms of ties for baby include:
difficulty latching / poor or shallow latch
clicking when sucking
ineffective milk transfer / poor weight gain
failure to thrive
irritability or fussiness at the breast
cannot sustain latch / pops on and off frequently
dependent on nipple shield
cannot hold pacifier in mouth (may be able to use a Mam pacifier, though this is a further sign of dysfunction)
fatigues or quickly falls asleep when feeding
frequent cluster feeds or feeding more than the norm
chewing / gumming nipple
dimple of cheeks while sucking
absence lip flange
Babies can also have oral dysfunction in addition to a tongue or lip tie. Oral Dysfunction is a broad term that includes varied conditions that impair the normal and healthy function and development of the face and mouth for musculoskeletal or neurological reasons. This is why therapy before scheduling a tongue tie/lip tie release is so important, we need to determine the degree to which the restricted frenum is impacting function, as well as how much body tension, muscle tone, and baby’s nervous system are impacting function. Pre-op therapy is aimed to possibly avoid needing a tongue tie release, while also preparing baby and their family in how to best use their bodies and mouths to feed as efficiently as possible even with the biomechanical/anatomical restriction of the tongue tie. This approach drastically improves positive outcomes from release procedures.
Potential long term impacts of TOTs that have not been released include: sleep disordered breathing, speech and feeding difficulties, open mouth breathing, reflux, improper palatal and facial development, enlarged tonsils and adenoids, cavities and crowded teeth, chronic ear infections, and behavioral challenges.
If you’re baby is demonstrating difficulty in their feeds at breast or bottle, has reflux, gets frequent hiccups, or you have a gut feeling that something may be less than ideal — please reach out for an evaluation. If you’re not local to the Philly area, don’t hesitate to reach out for help finding a provider near you. These directories can be helpful in finding someone near you:
International Consortium Of Ankylofrenula Professionals (ICAP)