Tuesday, June 26, 2012

Lip-Tie

Last Friday we loaded up the girls and headed to (city removed)* for a much anticipated, long sought dentist appointment.  We were not disappointed.  The office of (dentist name removed)* was fantastic with it's fresh flowers and beautiful decor.  His lovely receptionist/scheduler met us with a kid friendly grin. She happens to be a licensed O.T. which I find to be a complete score for the dentist.  And the visit started with Ellie's first non-house pee-pee on the potty, so we were off to a good start. 

Big Sister was the first to be examined.  (Dentist) took a look and announced her tongue looked great - no posterior tongue tie! Hooray!  However further examination showed that she has a severe lip tie (from his description I am guessing it is a class 4), and a very high, misshapen palate. He believes the palate issue is affecting her sinuses, breathing, sleeping, and swallowing.  It has created a cross bite making it hard for her to chew, and he said sometimes it can even effect the tonsils.  He said the lip tie will be easy to fix with the laser, and then very kindly explained that the palate issue was due to her mouth muscles.  The summary:  confirmation of my mommy fear. My listening to her initial pediatrician about how tongue ties are no big deal resulted in her mouth not growing right.  My solace was someone finally validating what I see when I look in her mouth - a palate that could hold one of those round, rubber, bouncy balls from a vending machine.  It only took 6 years. She will need an orthodontic spacer retainer for the roof of her mouth, and she needs it now to avoid further complications or surgery in the future.  When I asked how long she would have to wear it, he said he was sorry she would have to wear it from 4-6 months.  4-6 months? Piece of cake! After 6 years of worry and knowing something was wrong, I am certain 4-6 months will be nothing.  Unlike Ellie, Big Sister has gone through extensive speech and feeding therapy yet no one ever diagnosed her lip tie and palate issue (insert giant exasperated SIGH here). This is the first time we have had answers and a solution. This makes me ecstatic.

Next up was Ellie.  Following Big Sister's brave lead she climbed up into the exam chair without coercion.  Getting her to open her mouth was a whole other issue.  She insisted on clenching and baring her front teeth each time he asked to see them, and no matter how many times I explained 'say ah' she did not open her mouth.  I finally was able to pry her teeth apart so that he could take a general look and count. And then I carefully lifted her front lip so he could see the tie - to which he said, 'hers is actually worse'.  Wow!  Big Sister's class 4 already extends into her palate, so what does that mean for Ellie's? A worse class 4, I guess.  He said her tongue appeared o.k., but was unable to see into the rest of her mouth, so he will complete her exam when we come back for the laser surgery.

The surgeries are important.  In addition to speech and feeding issues, both girls would have a gap in their front teeth that is never able to close due to the muscle in the way.  I only wish we could have discovered the need and gotten the treatment sooner.  I was thrilled to hear that (dentist)'s office focuses on providing education about the treatment of tongue and lip ties to the local agencies that work with infants.  There is a huge gap in knowledge regarding feeding issue and GI symptoms in infants.  If you have not had a chance to investigate Dr. Kotlow's work, it is quite remarkable.  His paper titled "Infant Reflux and Aerophagia Associated with the Maxillary Lip-tie and Ankyloglossia (Tongue-tie)" took my breath away and then reduced me to tears when I found it.  Not every FPIES child, or GAPS kid, or child with GI issue has a tongue or lip tie; but I was horrified to discover the number of them that do.  There may be some medical and nutritional reasons for that, which should be reserved for another post. 

We head back mid-July for two lip-tie surgeries and a retainer fitting. Details to be worked out include the oral sedative for both girls.  I am hoping to get it compounded for both, but forgot to write down the name of it.  One of my absolute favorite things about (dentist) is that he is a doctor who is still learning.  What a gem to find!  When we called to make our appointment he did not have the ability to give a sedative of any kind to a pediatric patient.  Because of the need for my girls, and my friends infant and toddler who also saw him recently, (dentist) sought out a solution.  By the time we arrived for our consultation he had an answer for us, knowing and recognizing Ellie's limitations.  Can you see my grin? I'm a happy mamma!

*name and city of this dentist have been removed after the writing of this post. procedures did not go well (see this post) and while this dentist was not spiteful or intentionally harmful in any way, I do not wish anyone finding this blog to feel we are referring to him for a pediatric patient.

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