Guest guest Posted December 22, 2004 Report Share Posted December 22, 2004 Hi Lea, Welcome to the group. Please ask any questions that you need. We're all here to help and support each other. Although RSS can seem a little daunting at first, please know that our kids are happy and active. I wouldn't trade my daughter for the world! How old is your son? What was his weight at birth and now? Just curious. Hope to hear from you soon. Leah, mom to 9 years and Olivia 5 years, 19lbs, 33 " , RSS, OI > > My son Rhys was just referred to a geneticist.They think he has > RSS.Right now we are very scared and not sure what to expect Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2004 Report Share Posted December 22, 2004 Hi Lea, Try and remember everything is going to be just fine! Take one day at a time and give all of this time to absorb. When my son was diagnosed 3 things helped me. #1 The MAGIC Foundation You can call them or go to their web site at www.magicfoundation.com they have great information on RSS and by joining you have almost an unlimited amount of articles on every aspect of RSS at your disposal. The MAGIC Site is great for listing out the traits of RSS. It was very comforting to me to see what was ahead in Coby's future. #2 this group of people. They are fabulous and a wealth of information. Take advantage of us. If a doc says something you don't understand just ask us. One of us is around just about 24 hours a day. We understand what you're going through; we've all been there too. #3 finding a great doctor to coordinate Coby's care. Finding someone that I felt comfortable with and that was experienced with RSS. Ours happens to be a Geneticist. I can call him or e-mail him at any time with any questions. He is great with Coby and looks at him as a whole. Although there seem to be many complications to RSS, as you get through each one you realize that it is possible and that you son is going to grow up to be a happy, healthy, prosperous young man. My son Coby is 26 months old. Although he is smaller then his twin sister, he is talking more then she is and he is doing almost as much as her developmentally as well. He is our little mad scientist. He is too smart for his own good..hehehe Please fill us in on you and your family as well. Take Care! le…wife to and mom to: ShyeLynn 10, Brock 8, and Coby (rss) & Carlee 2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2004 Report Share Posted December 23, 2004 Hi Lea, My son Blair was diagnosed with with RSS two months ago, he is 14 months old. I completely understand how you are feeling, it is very frightening. On the positive side, which I try to keep thinking about, Blair is the happiest, healthiest and most handsome boy. He may be tiny but he brings an enormous amount of joy to us. Please feel free to email me with any questions. I'd love to hear about Rhys. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2004 Report Share Posted December 26, 2004 welcome to this amazing group of support and info. everyone here is great!!! did you check out Magic's website yet www.magicfoundation.org could you please give us more info on your child? my son is 4 and is rss 26lbs 36 " he is on periactin which is an appitite stimulant. he has assmentry on his left side (there is a 1cm difference between his legs. he is ADHD and OCD. otherwise he is a bright and engergetic boy. he attends preschool 5x a week where he receives some slight OT. he eats on his own (no feeding tube). we are waiting to restart GHT. good luck!! jodie c. PS where are you from we are in NJ? > > My son Rhys was just referred to a geneticist.They think he has > RSS.Right now we are very scared and not sure what to expect Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2010 Report Share Posted February 6, 2010 Hello all! I am a new Crohnie, just diagnosed in Nov. '09. I have not taken drugs yet, but instead started right away on the SCD. What experiences do others have who have stayed on it for a long time? Are there others who are not currently taking Western drugs? Thanks! Quote Link to comment Share on other sites More sharing options...
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