Guest guest Posted February 9, 2006 Report Share Posted February 9, 2006 Hi Lorraine, Welcome to our group. I hope we can answer your questions. May we ask you a few? Can you tell us more about your son? How big is he (height and weight)? Is he on growth hormone? My son is 8 and has been on growth hormone since he was 4. Does he take periactin (an appetite stimlant)? Where in the L.A. area do you live? Who is your geneticist? Endocrinologist? I know I am asking a lot of questions. There are many people on this list who live in the LA area and they will be asking these questions and more. No need to answer me, but it might be a good idea to have these answers ready. One of them is Jennfer Brock Salem. She is the Magic Division director. She has a ton of info that will be useful to you. Last, do you belong to the Magic Foundation (magicfoundation.org). Many on this list do and they find it very useful. Magic also has a convention in late July than many attend and learn alot while there. I hope this helps. Ken M > > Hello to all, my name is Lorraine and I have a 5 year old wonderful > little boy who has a working diagnosis of -Silver Syndrome. We > live here in L.A. California. I feel good that I found a support group > that I could come to and share with. As of now, my son's > endocrinologist can't give me a definitive answer as to whether he has > -Silver syndrome, all we know is that his growth doesn't look > good meaning he is not gaining weight and height. Anyway, that is just > about the jist of my situation. Thank you for accepting me to this > group. > God bless, Rraine > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2006 Report Share Posted February 9, 2006 Hi Lorraine! Welcome to the site. I know you will learn lots here ...there are many, many people on board that know alot about RSS. It's the right place to be! I have a son Noah who is 3 and been diagnosed with RSS. He is currently on Periactin and just started Growth Hormone Therapy that Ken was talking about. Dawna Matt 13, 11, 8 and Noah 3 RSS > > Hello to all, my name is Lorraine and I have a 5 year old wonderful > little boy who has a working diagnosis of -Silver Syndrome. We > live here in L.A. California. I feel good that I found a support group > that I could come to and share with. As of now, my son's > endocrinologist can't give me a definitive answer as to whether he has > -Silver syndrome, all we know is that his growth doesn't look > good meaning he is not gaining weight and height. Anyway, that is just > about the jist of my situation. Thank you for accepting me to this > group. > God bless, Rraine > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2006 Report Share Posted February 9, 2006 Hi Lorraine, Welcome! This group has been a lifeline since my daughter Dasia was diagnosed with RSS. She just turned 2. I hope you find all you are looking for here. I look forward to getting to know more about you and your son. And you can remind me how beautiful southern CA is this time of year! I used to live in Santa Clarita, I miss the endless sunny days so much. Take care! lorraine wrote: Hello to all, my name is Lorraine and I have a 5 year old wonderful little boy who has a working diagnosis of -Silver Syndrome. We live here in L.A. California. I feel good that I found a support group that I could come to and share with. As of now, my son's endocrinologist can't give me a definitive answer as to whether he has -Silver syndrome, all we know is that his growth doesn't look good meaning he is not gaining weight and height. Anyway, that is just about the jist of my situation. Thank you for accepting me to this group. God bless, Rraine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2006 Report Share Posted February 9, 2006 Hi Lorraine, Welcome to the group! You've found a great bunch of people here. My youngest daughter Olivia is 6 years old and has RSS. What is your son's name? Is he in school? Looking forward to hearing more about you guys! Leah, mom to almost 11yrs and Olivia, 6 yrs, 23lbs, 36 " , RSS, OI > > Hello to all, my name is Lorraine and I have a 5 year old wonderful > little boy who has a working diagnosis of -Silver Syndrome. We > live here in L.A. California. I feel good that I found a support group > that I could come to and share with. As of now, my son's > endocrinologist can't give me a definitive answer as to whether he has > -Silver syndrome, all we know is that his growth doesn't look > good meaning he is not gaining weight and height. Anyway, that is just > about the jist of my situation. Thank you for accepting me to this > group. > God bless, Rraine > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2006 Report Share Posted February 9, 2006 Lorraine, Welcome! We're glad you've found us too! Feel free to ask any questions you may have or jump in anytime! If you haven't already, check out www.magicfoundation.org <http://www.magicfoundation.org/> . One of their division consultants, Salem, has a 10 yr old daughter with RSS and they live in LA too! She would be able to give you lots of suggestions on physicians in your area! Dayna _____ From: RSS-Support [mailto:RSS-Support ] On Behalf Of lorraine Sent: Thursday, February 09, 2006 2:07 PM To: RSS-Support Subject: Hello to Everybody Hello to all, my name is Lorraine and I have a 5 year old wonderful little boy who has a working diagnosis of -Silver Syndrome. We live here in L.A. California. I feel good that I found a support group that I could come to and share with. As of now, my son's endocrinologist can't give me a definitive answer as to whether he has -Silver syndrome, all we know is that his growth doesn't look good meaning he is not gaining weight and height. Anyway, that is just about the jist of my situation. Thank you for accepting me to this group. God bless, Rraine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2006 Report Share Posted February 9, 2006 Hello Lorraine. Welcome to the group! We would love to hear more about your son! My son, Brockton, was diagnosed in November. He's 17 1/2 mo. old now and weighs 16 pounds 13 ounces and is 27 3/4 inches long. He weighed 1 pound 9 ounces and was 12 in. long at birth. I am 40 yrs. old and my fiance' is 38. We also have a daughter who will turn 19 in 2 weeks. Crazy? YES. Haha! Once again, Welcome. Jeanie lorraine wrote: Hello to all, my name is Lorraine and I have a 5 year old wonderful little boy who has a working diagnosis of -Silver Syndrome. We live here in L.A. California. I feel good that I found a support group that I could come to and share with. As of now, my son's endocrinologist can't give me a definitive answer as to whether he has -Silver syndrome, all we know is that his growth doesn't look good meaning he is not gaining weight and height. Anyway, that is just about the jist of my situation. Thank you for accepting me to this group. God bless, Rraine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2006 Report Share Posted February 9, 2006 Hi! Welcome to the group! I am and I am the lucky mother of 4 great but crazy kiddos. My 2 yr old daughter has RSS and my 7 mos old daughter is SGA possible RSS. I also have a 3 yr old son and a 7 year old son. This group is a great place for information and support, I am glad you found us. mom to AUtumn RSS 2 yrs, Summer SGA possible RSS 7 mos, Ocean 3, Skye 7 > > Hello to all, my name is Lorraine and I have a 5 year old wonderful > little boy who has a working diagnosis of -Silver Syndrome. We > live here in L.A. California. I feel good that I found a support group > that I could come to and share with. As of now, my son's > endocrinologist can't give me a definitive answer as to whether he has > -Silver syndrome, all we know is that his growth doesn't look > good meaning he is not gaining weight and height. Anyway, that is just > about the jist of my situation. Thank you for accepting me to this > group. > God bless, Rraine > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2006 Report Share Posted February 11, 2006 hi, welcome to the wounderful " family " you have found one of the best places foor support and info. my son jacob is 9 and is rss/sga. please tell us more about you child as his weight and height. cara mom to jacob lorraine wrote: Hello to all, my name is Lorraine and I have a 5 year old wonderful little boy who has a working diagnosis of -Silver Syndrome. We live here in L.A. California. I feel good that I found a support group that I could come to and share with. As of now, my son's endocrinologist can't give me a definitive answer as to whether he has -Silver syndrome, all we know is that his growth doesn't look good meaning he is not gaining weight and height. Anyway, that is just about the jist of my situation. Thank you for accepting me to this group. God bless, Rraine Quote Link to comment Share on other sites More sharing options...
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