Guest guest Posted August 26, 2004 Report Share Posted August 26, 2004 Stine, I just looked at Pernille's pictures. What an adorable child! Now, does she have " that look? " It's hard to say. She does have blonde hair and blue eyes (seen A LOT at the convention when there are so many together). She also has rotated ears, frontal bossing, but her face does not have that triangular shape that I see in so many RSS kids. And her face look so much fuller. Pictures can be deceiving. Sometimes I see pictures of kids on the listserve and think they are not RSS, but when I see them in person, they are obviously RSS. I think that may be the case with your precious daughter. In the worst case scenerio, however, she could have SGA (small for gestational age) and the treatment is exactly the same. Only the letters are different. Keep on going with the RSS diagnosis. Your doctors know her much better than I do with only seeing her through photos. You are doing everything you can for her and that is the most important thing. Jodi Z. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2004 Report Share Posted August 27, 2004 Hi Stine, I did not look at the pictures. Pictures can be too deceiving to judge from. Generally the look is a triangular shaped face, very thin upper lip, bossing ( slight protruding ) of the forehead, low set ears and smallbody. It looks like the child has a large head and normal body but the opposite is true (normal head, small body). The best visual example is the cartoon character Tweety Bird. Anyway, hope this helps. Ken M > Hi everyone. > > You all talk about " that look " . I posted some pictures of Pernille > and wondered if anyone of you can say what you mean. Does Pernille > has " that look " . > > Pernille has no assymetry, so how can you see if she has that look? > > Thank you all..... > > Love Stine, mom to Kristoffer 4 and Pernille soon 2 RSS??? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2004 Report Share Posted August 29, 2004 Hi, I always thought that Storm looked a lot like a " Precious Moments " baby. Big head, Little body!!! Also that " Tweety Bird " shaped head! Pernille is beautiful! But, like others have said, it is very hard to distinguish the look in pictures. I have also found, that around 6 months to 15 months, it is easier to see " that look " ! As they get older they seem to loose some of the more distinguishing features. They fill out because they are finally gaining some weight! Anyhow, Storm had the look the most in his 10-12 months pictures, but it shows up even more on videos than it does in pictures! I also used to always say he looked similar to an alien. (the ones that are green with big heads and skinny little bodies!) I know, it sounds aweful, but that is how he looked to me, even before I knew about RSS! Anyhow, I hope this helps, Carmen, mom to Storm, 9years, RSS, 48inches and 53 pounds Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2004 Report Share Posted August 29, 2004 Max had a full head of red hair and, I guess, green eyes. They seem to change color unexpectedly. I, too, thought he looked " funny " and, due to his bright red hair, people called him a little leprechaun. (He also has pointy ears.) I would not dress him in green for that reason. He had " that look, " though, and I can still see it in some pictures, although on a daily basis, we do not see it. Jodi Z. Quote Link to comment Share on other sites More sharing options...
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