Guest guest Posted December 18, 2004 Report Share Posted December 18, 2004 I'm a mother of a 10 year old RSS-boy in Sweden. On behalf of a friend of mine who's right now at the hospital with her 3 year old RSS-boy I have two questions. First some backgound: Last spring when the boy had a cold his lungs were X-rayed to exclude pneumonia. As his lungs were X-rayed the doctors saw that his heart was enlarged (in comparason to the rest of his body, approx. 80 cm and close to 7 kilos). At that time the doctors said that his enlarged heart was nothing to worry about and no more medical examinations have been done regarding his heart. Today the boy is at the hospital again with intravenous drip, even this time time it all started with a cold and high temperature. The difference from the last time is that the doctors seem to worry about his enlarged heart and his mother is so worried. I told her on the phone that when it comes to my son the left part of his heart is smaller than the right part of his heart, but on the other hand he is smaller all over his left body, of course this goes for his heart as well. Since this boy do not have this assymetri, I had no answer to give his worried mother. Somewhere I think I have heard that enlarged heart sometimes is a part of the RSS-syndrome. Is that right? Is there anyone who knows anything about this? They also test him for diabetes. They have found enhanced contents of keton in his urine, and they have also found that the contents of bloodsugar is enhanced. Is there anyone who have some experience of this? Is it possible that he shows enhanced contents of keton and bloodsugar without having diabetes? Since the doctors experience of RSS are not the best we fear that they don't see the connection between RSS and his symptoms. Do you know anything about this? /Kerstin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2004 Report Share Posted December 18, 2004 Kerstin, I don't know the answers to a lot of your questions, but I can help with the ketone issue. This boy must have an IV drip containing 10% dextrose. He is not getting enough sugar into his blood and his body is burning muscle for fuel. That is why the ketones are elevated. It means that the store of fat is used up and the body starts to use other means to get the energy/fuel that it needs. This is common in RSS children. Even my RSS son, at 16, has this happen to him when he is sick. I wish I could help with the heart-related issues. I am not familiar with this being a part of RSS, but then again, there are always new things being discovered. For now, however, you must make sure that this blood chemistry thing is worked out. Oh - and check the potassium levels. Each time Max, my son, has high ketones, his potassium has been too low. Jodi Z Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2004 Report Share Posted December 18, 2004 Hi Kerstin, My son's heart was found to be slightly enlarged when he was about 2. The doctors here at the Children's Hospital in Boston were unconcerned. By the time he was 5, his heart was the right size for his body. The doctor did say it is not a characteristic of RSS. However, they did keep an eye on his heart for a while. He had a chest x-ray twice a year to make sure his heart was developing OK. The elevated ketone are the result of ones body using mucle for energy. It happens when your body uses up all of its fat reserves. Some on this list have more experience with this. This child may need an IV with 10% dextrose (D10). Your doctors may want to contact a Dr. Stanhope in London at the Great Ormond Street Hospital. He has written some articles about RSS and is one of the few doing any research on RSS. He may be able to provide some guidance. I hope this helps. Ken M > > I'm a mother of a 10 year old RSS-boy in Sweden. On behalf of a > friend of mine who's right now at the hospital with her 3 year old > RSS-boy I have two questions. First some backgound: > > Last spring when the boy had a cold his lungs were X-rayed to exclude > pneumonia. As his lungs were X-rayed the doctors saw that his heart > was enlarged (in comparason to the rest of his body, approx. 80 cm > and close to 7 kilos). At that time the doctors said that his > enlarged heart was nothing to worry about and no more medical > examinations have been done regarding his heart. > > Today the boy is at the hospital again with intravenous drip, even > this time time it all started with a cold and high temperature. The > difference from the last time is that the doctors seem to worry about > his enlarged heart and his mother is so worried. I told her on the > phone that when it comes to my son the left part of his heart is > smaller than the right part of his heart, but on the other hand he is > smaller all over his left body, of course this goes for his heart as > well. Since this boy do not have this assymetri, I had no answer to > give his worried mother. Somewhere I think I have heard that enlarged > heart sometimes is a part of the RSS-syndrome. Is that right? Is > there anyone who knows anything about this? > > They also test him for diabetes. They have found enhanced contents of > keton in his urine, and they have also found that the contents of > bloodsugar is enhanced. Is there anyone who have some experience of > this? Is it possible that he shows enhanced contents of keton and > bloodsugar without having diabetes? > > Since the doctors experience of RSS are not the best we fear that > they don't see the connection between RSS and his symptoms. Do you > know anything about this? > > /Kerstin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2004 Report Share Posted December 19, 2004 Kerstin - I would recommend that you contact Nonjia Rosen in Belgium. Her daughter Alice has RSS, and they started a foundation which has grown quite large called " ALICE " . Nonjia knows TONS of information about great doctors over in Europe -- although she does bring Alice to New York 2 or 3 times a year to see Dr. Harbison. Nonjia is a phenomenal woman and mother. Her email address is: Nonjia.Rosen@ owenscorning.com Good luck! > > I'm a mother of a 10 year old RSS-boy in Sweden. On behalf of a > friend of mine who's right now at the hospital with her 3 year old > RSS-boy I have two questions. First some backgound: > > Last spring when the boy had a cold his lungs were X-rayed to exclude > pneumonia. As his lungs were X-rayed the doctors saw that his heart > was enlarged (in comparason to the rest of his body, approx. 80 cm > and close to 7 kilos). At that time the doctors said that his > enlarged heart was nothing to worry about and no more medical > examinations have been done regarding his heart. > > Today the boy is at the hospital again with intravenous drip, even > this time time it all started with a cold and high temperature. The > difference from the last time is that the doctors seem to worry about > his enlarged heart and his mother is so worried. I told her on the > phone that when it comes to my son the left part of his heart is > smaller than the right part of his heart, but on the other hand he is > smaller all over his left body, of course this goes for his heart as > well. Since this boy do not have this assymetri, I had no answer to > give his worried mother. Somewhere I think I have heard that enlarged > heart sometimes is a part of the RSS-syndrome. Is that right? Is > there anyone who knows anything about this? > > They also test him for diabetes. They have found enhanced contents of > keton in his urine, and they have also found that the contents of > bloodsugar is enhanced. Is there anyone who have some experience of > this? Is it possible that he shows enhanced contents of keton and > bloodsugar without having diabetes? > > Since the doctors experience of RSS are not the best we fear that > they don't see the connection between RSS and his symptoms. Do you > know anything about this? > > /Kerstin Quote Link to comment Share on other sites More sharing options...
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