Mother warrior from Indiana

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by Mother warrior from Indiana
Thursday, April 23, 2009

Hi Quinn,

   I just watched The View and learned of this site.  My daughter is 2 and I have known that there is just something different about her all along.  In January of this year we were told of the possibility of a VCFS diagnosis only to learn after her genetic tests that it was ruled out.  However, she does have a lot of the symtoms and mild facial features.  have you aware if someone can have a form of this but still test negative on the CGH test?  I've almost given up on the medical community because our local docs continue to tell me to just wait things out, charge me a lot of money and do nothing for my daughter.  She has been receiving therapies since 1 year of age and I call all the shots for her.  I've even taken her to a chiropractic neurologist for treatments whom I believe has helped her the most.  She is scheduled to have her atrial-septal defect closed in May and we just pray it all goes well so we can continue to move forward.  Our next step to find out her diagnosis is to do an MRI of the brain and a skin biopsy to see if she has a mosaic form of some genetic syndrome.  Thanks for listening.  FIrst blogging experience.

                                  Laura