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Stubborn Babies

Posted by on Apr. 14, 2007 at 11:32 PM
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I don't know what we're going to do with Avery. The BoTox A injections worked for awhile. Now that they're wearing off, his tilt is back to being as bad as it was before the BoTox A. I'm just curious how many other stubborn babies there are out there? I'm not sure what we're going to do b/c our doctor is now wanting to send Avery to a Pediatric Orthopedist AND a Pediatric Neurologist to be checked out b/c nothing's working. Oh, and did I mention our new insurance won't cover his condition til August b/c it's a preexisting condition (he still has the state's MC+ program from when he was born, but that ends on his 1st birthday)


Here's our timeline of treatments:


July (2 months old) - Diagnosis of CMT...started home exercises

August (3 months old) - home exercises not showing improvement, added Physical Therapy

October (5 months old) - PT not showing improvement, added TOT Collar, kept doing PT 1x/week
January (8 months old) - TOT Collar and PT still not showing improvement (60-degree tilt), made appointment with doctor of Physical medicine
February (9 months old) - 1st set of BoTox A injections
March (10 months old) - started showing improvements
April (11 months old) - BoTox wearing off, back to 60 degree tilt...we have another set of BoTox A injections scheduled for Monday..April 16.

Just curious if anyone else has such a stubborn LO??

by on Apr. 14, 2007 at 11:32 PM
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mamatware
by Member on Apr. 18, 2007 at 9:55 AM
Robby is very stubborn also.  This sounds strange for me to suggest another kind of doc, but I would also have his eye's checked.  We are pretty sure Robby's vision played a large roll in his tort.  He could be regressing and being stubborn because he can see better holding his head that way.  That was the case with Robby.  As for the therapy...go to www.cmn.org
That's the Children's Miracle Network site.  More than likely they can pick up the therapy bills during the coverage gap. 
mamatware
by Member on Apr. 18, 2007 at 9:55 AM
Robby is very stubborn also.  This sounds strange for me to suggest another kind of doc, but I would also have his eye's checked.  We are pretty sure Robby's vision played a large roll in his tort.  He could be regressing and being stubborn because he can see better holding his head that way.  That was the case with Robby.  As for the therapy...go to www.cmn.org
That's the Children's Miracle Network site.  More than likely they can pick up the therapy bills during the coverage gap. 
Roxxanne19
by Group Owner on Jul. 18, 2007 at 9:46 PM
We took him to an opthamologist in May. He has no vision issues. His 2nd Botox shot is wearing off and his neck is getting worse again. THe PT informed us we've done everything we can short of surgery....

Desirée B.

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