Anyone have a child with RSS - Russell Silver Syndrome

Ashley - posted on 04/20/2011 ( 3 moms have responded )

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My daughter was diagnosed last Oct. She has been tested multiple times for this syndrome & everytime it has come back negative. The test is only 30% accurate. Due to her having some many of the characteristic they placed her into this syndrome. She also had alot of congenital diagnosis which could be the reason for these characteristics also. Any advice of what to look for if your child does have this syndrome.

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Candice - posted on 08/01/2014

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My daughter has it and was officially diagnosed at Colombia hospital by a growth specialist that knows about Rss. Triangular face curved pinkys small In size doesn't gain weight rapidly some have digestion and feeding issues
Go to the magic foundation there's an amazing book!!
Would love to talk more

Jamie - posted on 05/10/2011

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Have you checked out the MAGIC Foundation? They have hundreds and hundreds of kids with RSS and other growth disorders

Iridescent - posted on 04/20/2011

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A friend of mine on the facebook group : http://www.facebook.com/home.php#!/home.php?sk=group_128201623916975&ap=1 Pediatric feeding disorders / FTT/ GERD/and kiddos with feeding tubes - there is one mom with this as a definite diagnosis, and one that is a possible but unsure.

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