Guest guest Posted June 15, 2003 Report Share Posted June 15, 2003 Teena keep putting pressure going this type of response is normal from the doctor blame it on growing pains i got my fill of that too growing pains doesnt cause the problems these kids have i went through pictures of when she was younger and in most of them i could see the way she favoered 1 leg to another well looking even closer i noticed small things i didnt notice before like her foot was turned small things i didnt see years ago keep up the good work though let me know how it goes Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2004 Report Share Posted August 29, 2004 , How cool to get his pilot's license. It sounds like he loves to live life to the fullest. I know n goes 100 miles an hour if we let her. (n, 15, systemic) Re: Robbin > > Robbin: > What are they testing for genetic wise?? > The genetic test for Alports is not always reliable. We could pay 3-4000 > and insurance may or not pay for it, and the results may not add anything > to the treatment he needs. So based on the biopsy results we are treating > him with Cozaar, a blood pressure medicine, to try and stop the protein > in his urine; it has this effect too. The protein coming through his > kidneys and into his urine causes more kidney damage. If the Cozaar > doesn't work he'll need to go on prednisone. > I didn't sleep much last night (haven't been lately, go figure) but its > just going to take me a while to come to terms with this latest news. Rob > is not grasping the full meaning of it all and I think it is part defense > mechanism and part not wanting to know. I respect where he is right now > and I know that in time, little by little, he will be able to assimilate > the diagnosis' meaning in his life. For now, we are going to live every > moment.. > He wants to get his pilots license and though I hate the idea, I am > encouraging him every chance I get. He can get it in high school, FREE, > through a special program and I say 'go for it! " > I am hoping to sleep better tonight. > How is today?? > and Rob 15 Spondy > > On Sun, 29 Aug 2004 18:26:34 EDT Robbin40@... writes: > , > Prayers are with yall. is into the genetic testing. I am not sure > > what type insurance you have but 's was covered. We did the V- > Factor > testing first and will go from there. I do know about the HBP salt isnt > good . My > son had HBP at the age of 16 and he had to be monitored for 1 year. > Change in > diet got his undercontrol for him. (So far) What are the plans now for > Rob? > How are you doing? > Robbin > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2004 Report Share Posted August 29, 2004 Robbin: What are they testing for genetic wise?? The genetic test for Alports is not always reliable. We could pay 3-4000 and insurance may or not pay for it, and the results may not add anything to the treatment he needs. So based on the biopsy results we are treating him with Cozaar, a blood pressure medicine, to try and stop the protein in his urine; it has this effect too. The protein coming through his kidneys and into his urine causes more kidney damage. If the Cozaar doesn't work he'll need to go on prednisone. I didn't sleep much last night (haven't been lately, go figure) but its just going to take me a while to come to terms with this latest news. Rob is not grasping the full meaning of it all and I think it is part defense mechanism and part not wanting to know. I respect where he is right now and I know that in time, little by little, he will be able to assimilate the diagnosis' meaning in his life. For now, we are going to live every moment.. He wants to get his pilots license and though I hate the idea, I am encouraging him every chance I get. He can get it in high school, FREE, through a special program and I say 'go for it! " I am hoping to sleep better tonight. How is today?? and Rob 15 Spondy On Sun, 29 Aug 2004 18:26:34 EDT Robbin40@... writes: , Prayers are with yall. is into the genetic testing. I am not sure what type insurance you have but 's was covered. We did the V- Factor testing first and will go from there. I do know about the HBP salt isnt good . My son had HBP at the age of 16 and he had to be monitored for 1 year. Change in diet got his undercontrol for him. (So far) What are the plans now for Rob? How are you doing? Robbin Quote Link to comment Share on other sites More sharing options...
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