What is Short Stature
Short stature refers to a height of a human being which is below expected. Shortness is a vague term without a precise definition and with significant relativity to context. Becaus...
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Russell Silver Syndrome
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My little boy has just tested positive for Russell Silver syndrome. Does anyone have a child with this condition who can give me some advice on feeding or just what to expect in general? The doctors and dietitians in my area have never even heard of this disorder and we are still waiting to see someone who knows what they're talking about. It's very frustrating. I just want to know what to expect for my little man in the future.
Posted on 03/02/09, 04:03 pm |
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Jade ~ I guess there isn't alot of RSS out there! How are things going? 
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I guess not, I was told it's very rare. Never mind, things aren't going so bad. What you said about just feeding your son whatever he would take made me feel better about our situation. Our dietitian puts so much pressure on to get so many calories into Kieran, she obviously has no idea how difficult, (if not impossible), this is. I'm trying to relax more and just give him what he wants to have instead of worrying so much that he's not getting enough. Knowing that this worked for you is a comfort to me. In fact, my son seems to be on the large side for a russell silver child, he was actually 6lb5oz born at 39 weeks. My daughter has chicken pox at the minute so we're just really hoping the little man doesn't get it. My only other concern is that Kieran really doesnt sleep much, I think he might at some point be diagnosed with ADD which seems to be part of RSS? We're plodding along though, and I'm kind of hoping things might get easier as he gets older (maybe wishful thinking lol). How are you and your family? Have you had any luck finding anyone with an older RSS child? x
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I'm glad that I made you feel better :)! I think just taking it one day at time helps! Jacob didn't sleep when he was younger (come to think of it not much now either). ADD is a common trait of RSS...they don't tell you that but it it is as are learning disabilities. Jacob was always moving and you had to watch him 24/7 or else there would be hell to pay! Just do what you feel is right with Kieran that's the best way to deal with it. I trust in doctors (don't get me wrong) but sometimes they become obessed with their own ideas. I try to look at the old way of doing things ~ naturally and with heart rather than making myself crazy over what they think "should" be done! Good luck with the chicken pox ~ not envying you right now!
Donna~
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My 9 year old sons also diagnosed with silver rusell, still, look like 5 year old. I am very much interested to know your experience and how your son looks now. I am very worried as can not go for growth hormone treatment very long as this is expensive in India. We gave her growth hormone for two years. He just do not want to eat, he is average mentally. Doctor said there is no teat to verify silver rusell they just diagnose with clinical features. Please inform me about your son and your email.
my email is bhawna.vajpai@gmail.com
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My 9 year old sons also diagnosed with silver rusell, still, look like 5 year old. I am very much interested to know your experience and how your son looks now. I am very worried as can not go for growth hormone treatment very long as this is expensive in India. We gave her growth hormone for two years. He just do not want to eat, he is average mentally. Doctor said there is no teat to verify silver rusell they just diagnose with clinical features. Please inform me about your son and your email.
my email is bhawna.vajpai@gmail.com
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