Saturday, March 7, 2015

The "Ties" That Bind Us

Ok so  I have been in the lactation business for over 20 years and have always been aware of the negative impact tongue tie  had on successful breastfeeding.   But did I realize the fact that I had ties as well as my immediate family???   NO - not until recently.  I was sitting in a IATP conference (International Affiliation of Tongue Tie  Professionals) and I had my epiphany.  

We were examining each others mouths- I looked at my own mouth after someone pointed out that I had an incomplete tear of my upper lip tie as well as three ties under my tongue!  So back I go reviewing my life from an oral/structural perspective:  I remember falling as a child 4 or 5yo and tearing my lip, I had a huge space between my two front teeth which I had bonded together as an adult. No thumb sucking or braces but teeth grinding, sleep issues and TMJ problems with related stress/tension headaches.  

Then I begin to think about my mom, deceased at 75, who suffered gravely from severe TMJ issues.
My heart ached for her as I recounted all her issues and suffering.  For as long as I remember, her jaw cracked and popped when she chewed so she ate fast and swallowed some of her food whole.  Severe insomnia, headaches, chronic sinus problems, gut issues and she could only open her mouth two finger widths.  I do remember that she tried some dentistry interventions but to no avail.  Ultimately,the day she died from a severe cranial hemorrhage, they broke her jaw when they intubated her.  Thank God she was already unconscious and unresponsive.  It was horrible.   

My siblings all have tie related issues so in our case it ran in the family. The following is from Dr. Gheheri's website an ENT and leading specialist in (TOT)

'Genetics: There are several studies that examine the potential inheritance patterns of ankyloglossia (tongue-tie). 
  1. Acevedo et al in 2010 identified a Brazilian family that had both ankyloglossia and dental abnormalities. While it only looked at 12 patients, the study demonstrated an autosomal dominant pattern of inheritance. (For clarification, an autosomal gene is located on one of the 22 chromosomes that is NOT an X or Y chromosome. A dominant gene needs only one of the two copies to be passed to cause a specific effect - a 50/50 chance of getting the gene.) 
  2. Trying to answer the question why males are more affected by ankyloglossia than females, a Korean study by Han et al in 2012 identified potential X-linked patterns of inheritance.
  3. Klockars in 2009 identified that the prevalence of ankyloglossia in the population is approximately 4-5% and that inheritance is also passed in an autosomal dominant fashion (like Acevedo).
What these studies demonstrate to us is that there is likely some genetic predisposition towards ankyloglossia. My own observation in my patients is that greater than 50% of babies have a relative who also has ankyloglossia. As is the case with many genetic disorders, if a gene is passed from generation to generation, and that gene is potentially passed in a dominant fashion, more and more babies will be affected by that gene with each new generation and with increasing population size (assuming those affected will be able to have kids of their own).'

My entire family suffered and continue to suffer many of the problems listed below: my mom attempted to breastfeed us (5 children) but was unsuccessful and pressured by her doctor to formula feed.
Symptoms & issues caused by ties include:
•colic/excessive crying                                                          •teeth gapping
•gassiness/fussiness                                                               •premature tooth decay
•gagging/spitting up                                                               •food & texture aversions
•reflux  (GERD)                                                                    •sleep apnea     
•nursing abnormally often                                                                        •grinding teeth/ jaw
•all night nursing                                                                    •facial tension/muscle fatigue                     •seems unsatisfied after nursing                                              •migraines/headaches
•falling asleep quickly while nursing                                      •snoring
•refusal to take bottle or pacifier                                            *mouth breathing                      
*slow weight gain/weight loss                                                 •speech issues  (lisp, replacing letters with others,      •dehydration/jaundice                                                                                                                 avoiding talking, falling behind)
•shallow latch/poor latch/pops on & off the breast
•"clicking" sound while eating (breast or bottle)
•heart shape of tongue tip or dent in middle of tongue
•painful nursing
•breast feeding issues (not limited to thrush, clogged ducts, mastitis, bleeding or cracked nipples, vasospasms, tell-tale "lipstick shape" after nursing)
•over-supply/under-supply (from babe not emptying breast completely)

It is common when someone is directly affected by something that they then make it their passion- this is true of me and many of my colleagues. I find this expansive work extremely interesting as its has "connected the dots" on so many levels.  The challenge lies not in the diagnosis or treatment but in the education of parents as well as the medical professionals caring for them.

My hope is that this diagnosis and treatment of TOT will be more accepted and done as early as possible in order to avoid not only breastfeeding problems but lifelong issues as well.  

*See TOT videos here:   Post revision exercises
*Suggested links:

Others pioneers in this field:

Dr Robert Ghaheri
Kevin Boyd DDS specializes in airway
Ben Lynch –epigenetics
Brian Palmer DDS- sleep apnea/ BF

IATP- International Affiliates of Tongue Tie Professionals