Sunday, June 12, 2016

Headed on the Tongue Tie Awareness War-path

Well, I've reached my limit.

Any cup will eventually overflow if enough drips into it; I think I'm at the overflow point, and it's time to channel the runoff.  I've watched enough suffering of both babies and moms, I've heard enough nonsense and I've experienced enough exhaustion.  It's high time we had consistent and consistently simple care for tongue ties in our nation (and the world).  Let me quickly tell my story, summarize the current state of affairs, and outline my plan.

My story?  I've had three babies, all tongue-tied, and my own self, who is tongue tied.  With my first, my sweet Eowyn, I pushed through painful breastfeeding, reflux, and a baby who did not enjoy nursing for 5 months, because I didn't know about ties and everyone told me nursing always hurt at first anyway.  By 5 months her mouth had grown enough that my pain and hers went away, and we thought all was well.  However, her tie was still there, and though we had it revised at age 3 she is still in speech therapy at age 6.5 for a lisp caused by a tongue that sits too far forward in her mouth.  (Another symptom for her has been biting of her tongue repeatedly while eating; we're talking almost daily for her whole life.)

Patrick, whom I've loved nursing to chubby roundness
Second baby, Liam three months of heartache, exhaustion, mental torture and more to find anyone who acknowledged that something was not right in my beautiful baby's mouth.  I wasn't a hypochnodriac mom; my son projectile vomited, turned blue-white around the mouth, and actively fought nursing and bottle-feeding alike, starving himself all day and only feeding in his sleep with a complete plateau of weight gain, not to mention breastfeeding pain.  I was a sleep-deprived zombie going from one specialist to the next, until finally Dr. Kotlow revised my son's lip and posterior tongue ties and we began to improve.  We still needed several months of feeding therapy, cranionsacral therapy, chiropractic care and years of sensory play therapy along with a second revision of his tongue.  By two, all symptoms were finally gone including Liam's sensory aversions, reflux, laryngomalacia, feeding difficulties, texture issues, and uncomfortable latch.  (Full story here.)

Third baby, Patrick, had the most obvious piston tie and a lip tie so tight his upper mandible was (and is) notched.  We had his addressed at three days old, again at 6 weeks, and a third time under the tongue at 3 months.  It was three months of stretches, massive nutritional supplementation for me (for him), many therapies, and body work BUT by 5 months we were done with everything, settled into comfortable, easy nursing with a baby who never once stopped gaining (he's still in the 90th percentile for everything at almost 8 months), is happy and easy going.  Sure, it was an intense road up front but it was DONE, totally done, by 5 months.

Three kids-- first still dealing with tie repercussions at age 6.5; second, finished by age 2; third, finished by age 5 months.  Which would you pick?

Current state of affairs.  In my area of the country, there are two-three providers who do releases correctly in each major city.  However, NONE of them are pediatricians or primary-care providers, which is problematic for many families when it comes to paying for a release (though all of the care providers are exceedingly gracious and many will do payment plans). There are only one or two IBCLCs who are experienced with ties, and usually only a handful of SLPs (speech language pathologists, who handle feeding therapy in SC) which is far too few, especially since moms with tied babies/toddlers need a good deal of support until the tie is resolved.  So this is discouraging enough, but to add to it practices in my area who actively DISCOURAGE treatment of tongue ties, blame mothers and babies, and IBCLCs who spread misinformation regarding these issues, and you have an intolerable situation.  Honestly, it amounts to oppression and injustice.  Children are left to suffer, often for life, never knowing that their speech, dental, digestive, sleep, and respiratory issues are caused by a thin tendon being too tight in their mouth.  Many are labeled "high needs," "fussy," "colicky," and "lazy."  Moms are left to suffer and feel guilty for weaning early, bottle-feeding, or to push through difficult breast-feeding, physical pain, disrupted sleep; often they are blamed when their babies are gassy or don't gain weight.  They are told their milk quality is poor, that they must be eating things their baby doesn't like, that it's normal for nursing to hurt or for babies to eat for hours around the clock. Families either don't know treatment is possible, or its unavailable, or they are discouraged from seeking it because they are told the procedure is controversial, risky, painful, and/or with awful aftercare.  (Having gone through it a total of 8 times in our own home, at various ages, I can assure you a properly done release is NOT that bad!!  Worth the pain for sure!)

In my dream world, babies would be checked for ties at birth, at 2 days old and at 6 weeks; all OBs, midwives, family doctors and pediatricians would know how to assess tongue & lip range of motion properly and how to release in office (with laser, scalpel or scissors), or would refer to a practitioner who did (lasers are so effective and generally only dentists or ENTs will have those).  All moms would be assured that the procedure is quick, safe, and with relatively low pain & risk involved.  All IBCLCs and above mentioned care providers as well as chiropractors would know all the symptoms of a tie in a nursing dyad (baby OR mom) or a bottle-fed infant, so no one would fall through the cracks.  The procedure would be so commonplace and inexpensive that insurance wouldn't hesitate to cover it.  Lastly, many trials and studies would be going on to determine WHY we are experiencing such a spate of restricted oral tissues right now, and how to avoid them in future generations.

My plan.  I've got a fire in my bones about this.  Posting some thoughts on the Tongue Tie Babies Support Group on FB got immediate support and lots of feedback, so here is my approach:

  •  to have an online printable letter for parents to print & give to their care providers, based on existing letters by Dr. L Kotlow (here) and Dr. B Ghaheri (here).
  •  to send letters to every care provider in Greenville (my area) personally 
  •  to personally & publicly call out local practices that have blocked treatment of TT babies (through open letters posted here and also mailed 
  •  to have an online petition to make three proper exams for ties a standard of care for every baby (at birth, at two days and at 6 weeks) - to send info to Good Morning America with the hope of having Dr Kotlow or Dr Notestine or Dr Ghaheri or Dr Newman to speak on the ease of releasing and the need for it
Harry Potter fans, this is my S.P.E.W. 


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