Thursday, June 21, 2012


Ellie began refusing food and being fed at about 10 months old.  She has not taken a spoon ever since. A combination of associating food with pain, never allowing her to put things in her mouth for normal development milestones, not being able to eat food, and an entire list of other factors have created a toddler who is almost 3 and still on the bottle ... or so we thought until recently.

Specialist appointments and two feeding evaluations have left doctors saying her delays are not physical, but are entirely developmental.  They all agree she needs intense therapy and now has full body hypersensitivity.  We were introduced to body brushing and the importance of desensitizing the mouth.  The toothbrush introduction went semi-o.k.; the body brushing was way too much for her to handle.  Instead we use our hands to put pressure on various areas of her body and help bring awareness to things other than her mouth and butt.  We especially use this when she gets a bump or bruise because her sense of pain is completely exaggerated.  One skinned knee brings hysterics, and I quickly learned that if I grab her and begin applying pressure to other areas of her body she has an easier ability to calm down.

About 4 months ago I was attempting to 'brush' Ellie's teeth when I discovered what appears to be a class 3 (perhaps a class 4) lip tie.  I soon learned there are lip ties, anterior tongue ties, and posterior tongue ties. Having one increases the risk of having another, so I want to be sure she is examined for all three.  Research has also shown that there are only a handful of doctors in the country who are trained to diagnose and treat posterior tongue tie.

Big Sister was born with a class 1 tongue tie, and it is one of the biggest mommy regrets I have.  I listened to the pediatrician who said 'oh tongue ties are over diagnosed - she will be fine', and the result has been speech and feeding issues.  It took months of fighting to get her a frenulectomy at three years old.  It could have been a no risk office procedure when she was an infant.  She has gone through feeding and speech therapy, and at 6 years old she still has trouble swallowing and speaking.  There is a chance she has an untreated posterior tongue tie.  NOW I know that tongue and lip ties are most likely completely underdiagnosed.

For 4 months I have searched for someone to examine both girls, as well as fix the problem.   Finding a doctor, oral surgeon, or dentist who is trained in posterior tongue tie, uses a laser, and also does pediatric sedation, is almost an impossibility. The Intenational Affiliates of Tongue Tie Professions, founded and led by Dr. Kotlow of NY, has given me help on the search; yet everyone I called was either unable to treat the posterior tongue tie, did not do pediatric sedation, or could not do a lip tie this severe.  We are applying for Ellie to be seen at the local Shriner's for her spine and mouth, but this is of no help to Big Sister. I began to think I would have to fly them both to New York.

A friend looking for her own kids led us to a pediatric dentist 2 hours away.  He does not do pediatric sedation, but is experienced in posterior tongue tie and considered an excellent laser dentist by Dr. Kotlow. Not covered by insurance, an evaluation will cost me $75 per kid.  Tomorrow morning we get up extremely early to make the 2 hour drive to Sonoma, and I think this will be $150 well spent. And I believe Ellie is ready.

On the final day of Team Ellie, I was witness to one of the biggest miracles I had seen in some time.  At Ellie's last O.T. evaluation it was strongly suggested that we feed her meatballs.  Meatballs she can feed herself, are safe, and provide new texture.  After at least 6 months of trying to bribe, beg, and manipulate her to eat a meatball, on May 10 she asked for one, put it in her mouth, and spent 45 minutes carrying around, sucking on, and attempting to bite pieces off of meatballs.  I was floored.  She has slowly progressed from that day, and now she will willingly feed herself soup and participate in dinner. I can no longer let her carry around food that she is not ready for, because she may take a bite!

It is not in the plan for either girls to receive surgery tomorrow morning, but I am anxious for the information an evaluation will give us.  Big Sister needs to eat without gagging, and Ellie needs to learn how to chew.  It's not often I am excited about a doctors visit!

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