Guest guest Posted June 20, 2004 Report Share Posted June 20, 2004 Hello, I am posting this again, since the first one has not been posted. I am in need of any help or info. I can get on RSS. My son has some issues going on that seem to me like it could be RSS. His geneticist did not feel this is what he had but I am still not convinced. Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2004 Report Share Posted June 21, 2004 Welcome to the group. You will get so much information on here - it has helped me tremendously. I have a daughter (9 months) who we still don' have the answer as to whether or not she is " RSS or SGA " . We did see one geneticist in our home town who said " Definately not " - but since we were not satisfied with his conclusion we got a second opinion from another geneticist who said " Probable RSS " . In short, we are planning to go to the convention in Chicago and meet with Dr. H. If you are able to attend I believe you would get your answer there. Check with Salem about any more openings to see Dr. H. Good luck and welcome aboard. Jane - mom to - 9 months, " probable RSS " , 12#, 24 " , Gavin 4 yrs nonRSS and Aidan 2 yrs nonRSS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2004 Report Share Posted June 21, 2004 Hello, We have also seen a couple of geneticists and the first one says no RSS the other has no idea. I would like to go the convention but doubt I can make it. I will continue to search for my answer. Thank you > > > Welcome to the group. You will get so much information on here - it has helped me tremendously. I have a daughter (9 months) who we still don' have the answer as to whether or not she is " RSS or SGA " . We did see one geneticist in our home town who said " Definately not " - but since we were not satisfied with his conclusion we got a second opinion from another geneticist who said " Probable RSS " . In short, we are planning to go to the convention in Chicago and meet with Dr. H. If you are able to attend I believe you would get your answer there. Check with Salem about any more openings to see Dr. H. Good luck and welcome aboard. > Jane - mom to - 9 months, " probable RSS " , 12#, 24 " , Gavin 4 yrs nonRSS and Aidan 2 yrs nonRSS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2004 Report Share Posted June 21, 2004 Hi , Welcome! Where are you located? There is a wonderful endo who specializes in RSS who works in NY. If you could get to see her, that would be wonderful. Also, there is an annual Magic Foundation convention in Chicago in July. That same doctor (along with others) will be at the convention and will be seeing patients. I have four year old twins, one of whom has RSS. Feel free to email me direction with any questions. Judith, Steve, (RSS) and (non rSS) 4 year old twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2004 Report Share Posted June 21, 2004 Hi Judith, I am in Ohio so it is not to far to travel. I doubt I can make the convention in July. Does this Dr. take emails and questions? That would be great if I could email her and send her pictures of my son. > Hi , > > Welcome! Where are you located? There is a wonderful endo who > specializes in RSS who works in NY. If you could get to see her, > that would be wonderful. Also, there is an annual Magic Foundation > convention in Chicago in July. That same doctor (along with others) > will be at the convention and will be seeing patients. > > I have four year old twins, one of whom has RSS. > > Feel free to email me direction with any questions. > > Judith, Steve, (RSS) and (non rSS) 4 year old twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2004 Report Share Posted June 21, 2004 , Dr. Harbison WILL take emails and pictures. There is a form she likes to have filled out first with length/height and weight info. and some other stuff. I have the form. You can email me privately and I will send it to you. It is in Excel. I'll also give you her email address at the hospital where she is now relocated: Mt. Sinai in Manhattan. Jodi Z. magicrss@ hotmail.com (leave out the space - this site won't print email addresses without it) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2004 Report Share Posted June 23, 2004 Hi , My name is Pat, and I am g-ma to one of the 's on the list serve. His pics are under Lee in the photo section. Where abouts in Ohio do you live? We live on the North Coast, up by Lake Erie, west of Cleveland. Pat (g-ma to , RSS, 29 months, 21.4#, 30.6 " , Prevacid, Zantac, Singulair, Miralax, GTube. Pulmicort, Zopenex) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2004 Report Share Posted June 23, 2004 Hi Pat, I live in Mentor. > Hi , > > My name is Pat, and I am g-ma to one of the 's on the list serve. His > pics are under Lee in the photo section. Where abouts in Ohio do you > live? We live on the North Coast, up by Lake Erie, west of Cleveland. > > Pat (g-ma to , RSS, 29 months, 21.4#, 30.6 " , Prevacid, Zantac, > Singulair, Miralax, GTube. Pulmicort, Zopenex) Quote Link to comment Share on other sites More sharing options...
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