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mommysweetpea 02-07-2012 09:05 AM

Velocardiofacial syndrome?
Waiting on the blood test results to make it "official" but the ped ENT is certain this is what my DD has. Anyone else out there with this diagnosis? Looking on google is freaking me out so I need to stop doing that! Thanks!

jen_batten 02-07-2012 02:17 PM

Re: Velocardiofacial syndrome?
I don't have that--as a matter of fact I have no idea what that is. But I just wanted to say read everything online with a grain of salt. My daughter has focal cortical dysplasia (read: fancy words for a particular kind of brain damage). When she was first diagnosed I read everything I could find online. Almost all of it is about horrible, horrible siezures. My daughter has never had a siezure. Most of what I read didn't apply to us. So take heart, that some of that scary stuff might not be relavant. Take a deep breath, and remember to take time to enjoy your DD. It is all too easy to focus on outcomes, and obstacles, goals, and IFSPs, especially in the beginning. One day at a time....

bananagrams 02-08-2012 12:28 PM

Re: Velocardiofacial syndrome?
Hi mama, I don't have a child with VCF, but I'm a genetic counselor and have worked with families with this diagnosis. There is a great foundation called 22q ( where you can connect with other families. I'd be happy to answer any questions you might have as well.

mom2cse 02-09-2012 01:38 PM

Re: Velocardiofacial syndrome?
Hope things are well with you and your little one.

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