Guest guest Posted September 16, 2004 Report Share Posted September 16, 2004 Hi everyone..... Just wanted to let you know the last update on Pernille. We have just been to her doc and he is still wondering about RSS. She is definitve SGA..... We have an appointment on the 5. october with a spesialist here in Norway, if he is not sure we will be sent to Oslo, the capital to a senter they have there. It is called senter for " strange deseaces and syndroms " . The good news is that we are now sent to a senter for ressurses. They have speach therapy, fysio, doc, phsykologies etc.... They have experties on which items we can have to help her reach up to the sofa etc. We also talked to the doc about growth hormones. He said that if her growth is the same in 1 year she definitiv will get offered growth hormones. Starting at year 3. We are so excited to help her more. Stine mom to Kristoffer 4 and Pernille soon 2 SGA and might be RSS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2004 Report Share Posted September 16, 2004 HI! You must feel relieved! Pernille now has a diagnosis so you can move forward and get the help she needs. Good luck! > Hi everyone..... > > Just wanted to let you know the last update on Pernille. We have > just been to her doc and he is still wondering about RSS. She is > definitve SGA..... We have an appointment on the 5. october with a > spesialist here in Norway, if he is not sure we will be sent to > Oslo, the capital to a senter they have there. It is called senter > for " strange deseaces and syndroms " . > > The good news is that we are now sent to a senter for ressurses. > They have speach therapy, fysio, doc, phsykologies etc.... They > have experties on which items we can have to help her reach up to > the sofa etc. > > We also talked to the doc about growth hormones. He said that if her > growth is the same in 1 year she definitiv will get offered growth > hormones. Starting at year 3. > > We are so excited to help her more. > > Stine mom to Kristoffer 4 and Pernille soon 2 SGA and might be RSS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2004 Report Share Posted September 16, 2004 Stine - If you ever want to get hooked with an INCREDIBLE RSS family and the non-profit organization they started, let me know. The family is the Rosens, and they live in Belgium. They have Alice, with RSS (she is their youngest daughter). They fly to New York every 6 months to see Dr. Harbison. Nonjia, Alice's mother, is SOOO knowledgable about RSS, and knows MANY experts in Europe. I can give you her email address - just write me privately. Salem > Hi everyone..... > > Just wanted to let you know the last update on Pernille. We have > just been to her doc and he is still wondering about RSS. She is > definitve SGA..... We have an appointment on the 5. october with a > spesialist here in Norway, if he is not sure we will be sent to > Oslo, the capital to a senter they have there. It is called senter > for " strange deseaces and syndroms " . > > The good news is that we are now sent to a senter for ressurses. > They have speach therapy, fysio, doc, phsykologies etc.... They > have experties on which items we can have to help her reach up to > the sofa etc. > > We also talked to the doc about growth hormones. He said that if her > growth is the same in 1 year she definitiv will get offered growth > hormones. Starting at year 3. > > We are so excited to help her more. > > Stine mom to Kristoffer 4 and Pernille soon 2 SGA and might be RSS Quote Link to comment Share on other sites More sharing options...
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