Posted by Becky on 3/4/2008, 11:04 am, in reply to "Re: Bad day... just blabbing!"
98.21.32.178
Carleigh has never been diagnosed with Sticklers. My doc said that the stickler blood test is only 60% accurate, so they do the bone scan and then if there are any concerns we'll do the blood work. She had her blood drawn for chromosomes work. Checking for Turners and other syndromes. The only reason they are checking for Turners is because of her web neck. Doc doesn't think she has it, she is just covering her steps I think!
Also- my doc said that Carleigh has a "flatter face" so thats reason for bone scan. She also is in need of another eye exam. Hasn't been checked since 3 months, so they want to see about any eye problems appearing. Basically they are just trying all angles to make sure we know whether its isolated or not. I hope I answered your question.
--Previous Message--
: Becky,
:
: I am also sorry to hear how long and
: frustrating your day was. While CHOP is a
: superb facility, it can still feel like a
: cattle herd sometimes. It feels as though
: doctors are withholding info sometimes,
: doesn't it? That makes no sense, but when
: you are overwhelmed and you're not sure
: what's going on, nothing seems to make
: sense.
:
: I do have a question for you. My son was
: diagnosed with Stickler via genetic testing
: while he was in the NICU after birth. Why
: the bone scan? Was genetic testing done?
: If not, why not? And if yes, then why the
: bone scan also? I'm just confused and
: appreciate your help...
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