Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 I am a new member and havde not posted before. My daughter is still in the investigation stage, she was diagnosed to have skeletal dysplasia before birth due to short limbs but after birth was labeled proportionate IUGR. She has some characteristics of RSS, IUGR (3-15 lb and 15.5inches at 36 weeks), large forehead with mild bossing, huge fontanels, blue sclera (a rarer trait), and feeding problem, delayed bone age. I dont understand the triangle face thing, because none of the pictures of the RSS kids have seen the faces look triangular to me. She is on NG tube for almost a year, she now eats on her own during the day (4 meals each about 4 ounches formula+cereal+baby food mixed to about 30 cal/oz) and 9 hour drip feed at night. Despite her weight she has a cubby appearance. THe geneticist didnt think she was RSS but did not outright rule it out. Her endo is testing for GH, Noonan syndrome,etc. but has not mentioned RSS. posted a couple of pictures (they are taken at 9 and 12 months) in the album under Naomi. She is now 12.5 lbs and 23 inches, but is quite " chubby " in appearance despite the low weight. Wanted some opinion from experts here on RSS. Sabina Quote Link to comment Share on other sites More sharing options...
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