KIDS ARE KIDS........EVEN WITH MOEBIUS SYNDROME
(A good thing to remember.......)

Chapter 4 - Parent's Guide

Once a child has been diagnosed with something like Moebius Syndrome or any other significant syndrome or condition, it is not unlikely that new parents and even some veteran parents will have a tendency to wonder if every single unexperienced development is a result of the specific syndrome.  This of course is a result of love, fear of the unknown, and things of that nature.  None of us wants to fall short in the area of our child's needs.  We all ultimately do fall short in many ways but infant/toddler health is an intense area for most parents.  This chapter will attempt to illuminate that other parents share the same concerns, fears and love that we all feel.  We just want..........to know.

HI, MY NAME IS CINDY.  I HAVE A 3 1/2 YEAR OLD SON WITH MOEBIUS WHO HAS HUGE TONSILS, ADNOIDS AND LOTS OF FLUID IN HIS EARS. IN FACT, A RECENT HEARING TEST DETERMINED THAT HE HAS A 50% HEARING LOSS RELATED TO THE FLUID. HE'LL BE HAVING SURGERY THE END OF JANUARY TO REMOVE THE OFFENSIVE GLANDS AND TUBES WILL BE INSERTED.

MY QUESTIONS:  ANYONE ELSE HAD A SIMILAR PROBLEM? JUST CURIOUS IF THIS IS SYNDROME RELATED OR NOT? IF YOU OR YOUR CHILD HAS GONE THROUGH THIS, PLEASE OFFER ANY ADVISE, OR INFORMATION YOU CAN. THANKS, CINDY

Cindy,

My daughter (Shannon) had the same problem and we did the tubes in the ears thing.  I felt terrible when they wheeled that little girl into the operating room.  She was crying, I was crying and her mom was crying.  I felt like I should be able to do something so she could avoid the pain.  I knew it was best but I was helpless.  Not a good feeling.   Shannon also had hearing loss as a result of fluid in the ears.  Consequently, her speech was affected as she was simply repeating what she heard.  Since she heard a limited amount, her speech was difficult to understand.  After the tube surgery her hearing did improve but it was necessary to enroll her in speech therapy to correct the habits she had learned during the impaired hearing portion of her development.  She does not have Moebius Syndrome.  I have no information from others that indicates this is a Moebius specific development.  As a matter of fact, Shannon's son age 2, my grandson, recently had the same surgery and again, does not have Moebius Syndrome.  I think we just happen to be genetically full of snot. 

TV

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