Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 The picture is under Jon W .....sorry i left that part out. Pattie (Jonathon 9 - this sunday) > > 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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