Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 Sabina - I am not a doctor and your geneticist will definitely run a gamut of tests. But I can tell you that after seeing about 200 RSS and SGA kids over the last 3 years at the Dr. H visit area at the MAGIC convention, your child looks eerily similar to many of the " over-tube-fed " RSS children. Jodi Z. - your thoughts??? I would recommend going to the CDC website to their growth charts and charting her " weight for height. " It sure appears that her weight is too much for her height. Dr. Harbison explains all this at the MAGIC convention (can you come in July)? But in a nutshell, being overweight for an RSS/SGA child puts them at an increased risk for developing early andrenarche and insulin resistance (we have seen pubic peach fuzz on over-tube-fed 2 year olds at the convention!). The triangular face is as follows: if you look at these kids (even your daughter's) and draw a line across the top of their heads (the top if large and wide) and now draw a single dot for their chin. Now draw two dots for each of their cheekbones. Now draw a line from each end of the top line to the chin. Now draw a downward line from the left end of the top line, through the left cheekbone dot down to the chin dot. Do the same for the right side. What you should find is somewhat of a triangle. This is because their mandible area (chin/jaw) is so small in comparison to their face/skull from the cheekbones up). The triangular facies is VERY exacerbated by being underweight. As an RSS child becomes older and more normal in weight, the triangular facies is more difficult to see. Have you gone to the magicfoundation. org website and gotten all of the RSS literature? Make sure you ask for old newsletters because there is a lot of good information in there. Salem > 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...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 -Sabina...I've had a look at your cute little daughter and as a mum of an Rss little girl I would say that Naomi looks like she has RSS,Tho' of course I am not a geneticist!!! Just an RSS mum.Best wishes xx Eileen-- In RSS-Support , " magicrss " wrote: > Sabina - I am not a doctor and your geneticist will definitely run a > gamut of tests. But I can tell you that after seeing about 200 RSS > and SGA kids over the last 3 years at the Dr. H visit area at the > MAGIC convention, your child looks eerily similar to many of > the " over-tube-fed " RSS children. > > Jodi Z. - your thoughts??? I would recommend going to the CDC > website to their growth charts and charting her " weight for > height. " It sure appears that her weight is too much for her > height. Dr. Harbison explains all this at the MAGIC convention (can > you come in July)? But in a nutshell, being overweight for an > RSS/SGA child puts them at an increased risk for developing early > andrenarche and insulin resistance (we have seen pubic peach fuzz > on over-tube-fed 2 year olds at the convention!). > > The triangular face is as follows: if you look at these kids (even > your daughter's) and draw a line across the top of their heads (the > top if large and wide) and now draw a single dot for their chin. > Now draw two dots for each of their cheekbones. Now draw a line > from each end of the top line to the chin. Now draw a downward line > from the left end of the top line, through the left cheekbone dot > down to the chin dot. Do the same for the right side. What you > should find is somewhat of a triangle. This is because their > mandible area (chin/jaw) is so small in comparison to their > face/skull from the cheekbones up). > > The triangular facies is VERY exacerbated by being underweight. As > an RSS child becomes older and more normal in weight, the triangular > facies is more difficult to see. > > Have you gone to the magicfoundation. org website and gotten all of > the RSS literature? Make sure you ask for old newsletters because > there is a lot of good information in there. > > Salem > > > > 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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