Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 Hi Angel, I was not diagnosed as a child personally, although I had symptoms since my teens. There is a list of questions on the yahoo web site under the files section that you might want to print out and take with you though. Good luck at his appointment! In a message dated 7/8/2004 10:51:36 PM Eastern Daylight Time, saturn70006@... writes: >I have an appointment with my 9 yr. old sons nephrologist tomorrow morning. >The first neph says that the tests he has done so far without biopsy indicate >IgA. We are getting a second opinion before biopsy. I think we will be >sticking with the new nephrologist. Anyway, my question is...I have a list of >questions to ask the dr. ..I am wondering if there is anything you guys would ask >that I have not thought of? >How many of you, if any, were diagnosed as a child. And is there anything >you would have done differently concerning your treatment? > >I do not feel my mother (she has custody for now...ugh) is taking this >seriously. Its very frustrating. > >Thanks for your help. You guys are truly an inspiration to me. Thanks. > >Angel > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 Hi Angel, I was not diagnosed as a child personally, although I had symptoms since my teens. There is a list of questions on the yahoo web site under the files section that you might want to print out and take with you though. Good luck at his appointment! In a message dated 7/8/2004 10:51:36 PM Eastern Daylight Time, saturn70006@... writes: >I have an appointment with my 9 yr. old sons nephrologist tomorrow morning. >The first neph says that the tests he has done so far without biopsy indicate >IgA. We are getting a second opinion before biopsy. I think we will be >sticking with the new nephrologist. Anyway, my question is...I have a list of >questions to ask the dr. ..I am wondering if there is anything you guys would ask >that I have not thought of? >How many of you, if any, were diagnosed as a child. And is there anything >you would have done differently concerning your treatment? > >I do not feel my mother (she has custody for now...ugh) is taking this >seriously. Its very frustrating. > >Thanks for your help. You guys are truly an inspiration to me. Thanks. > >Angel > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 Hi Angel, I too was diagnosed as a child. I was 11 years old, and at the time told the disorder was rare and nothing to do about it. For years (until college) I paid no attention (except for occasional flare-ups during illnesses). Then in college my aunt (a nurse) happened to check my bp and noticed it was elevated. Managed by diet and exercise to keep it controlled for a couple years - then started on ACE inhibitor. That worked for a few years until it crept up again and they added a Calcium blocker. That is still my current med regime. I am now 31 and fortunately (by the grace of God) my kidney function is still strong and creatinine is ~1.2. As for doing things different I would have monitored it better to be aware of that bp elevation, and maybe some more preventative measures (ACE inhibs, fish oil). - saturn70006@... 07/08/2004 09:51 PM Please respond to iga-nephropathy To: iga-nephropathy cc: Subject: A little advice.. I have an appointment with my 9 yr. old sons nephrologist tomorrow morning. The first neph says that the tests he has done so far without biopsy indicate IgA. We are getting a second opinion before biopsy. I think we will be sticking with the new nephrologist. Anyway, my question is...I have a list of questions to ask the dr. ..I am wondering if there is anything you guys would ask that I have not thought of? How many of you, if any, were diagnosed as a child. And is there anything you would have done differently concerning your treatment? I do not feel my mother (she has custody for now...ugh) is taking this seriously. Its very frustrating. Thanks for your help. You guys are truly an inspiration to me. Thanks. Angel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 Hi Angel, I too was diagnosed as a child. I was 11 years old, and at the time told the disorder was rare and nothing to do about it. For years (until college) I paid no attention (except for occasional flare-ups during illnesses). Then in college my aunt (a nurse) happened to check my bp and noticed it was elevated. Managed by diet and exercise to keep it controlled for a couple years - then started on ACE inhibitor. That worked for a few years until it crept up again and they added a Calcium blocker. That is still my current med regime. I am now 31 and fortunately (by the grace of God) my kidney function is still strong and creatinine is ~1.2. As for doing things different I would have monitored it better to be aware of that bp elevation, and maybe some more preventative measures (ACE inhibs, fish oil). - saturn70006@... 07/08/2004 09:51 PM Please respond to iga-nephropathy To: iga-nephropathy cc: Subject: A little advice.. I have an appointment with my 9 yr. old sons nephrologist tomorrow morning. The first neph says that the tests he has done so far without biopsy indicate IgA. We are getting a second opinion before biopsy. I think we will be sticking with the new nephrologist. Anyway, my question is...I have a list of questions to ask the dr. ..I am wondering if there is anything you guys would ask that I have not thought of? How many of you, if any, were diagnosed as a child. And is there anything you would have done differently concerning your treatment? I do not feel my mother (she has custody for now...ugh) is taking this seriously. Its very frustrating. Thanks for your help. You guys are truly an inspiration to me. Thanks. Angel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 Hi Angel, I too was diagnosed as a child. I was 11 years old, and at the time told the disorder was rare and nothing to do about it. For years (until college) I paid no attention (except for occasional flare-ups during illnesses). Then in college my aunt (a nurse) happened to check my bp and noticed it was elevated. Managed by diet and exercise to keep it controlled for a couple years - then started on ACE inhibitor. That worked for a few years until it crept up again and they added a Calcium blocker. That is still my current med regime. I am now 31 and fortunately (by the grace of God) my kidney function is still strong and creatinine is ~1.2. As for doing things different I would have monitored it better to be aware of that bp elevation, and maybe some more preventative measures (ACE inhibs, fish oil). - saturn70006@... 07/08/2004 09:51 PM Please respond to iga-nephropathy To: iga-nephropathy cc: Subject: A little advice.. I have an appointment with my 9 yr. old sons nephrologist tomorrow morning. The first neph says that the tests he has done so far without biopsy indicate IgA. We are getting a second opinion before biopsy. I think we will be sticking with the new nephrologist. Anyway, my question is...I have a list of questions to ask the dr. ..I am wondering if there is anything you guys would ask that I have not thought of? How many of you, if any, were diagnosed as a child. And is there anything you would have done differently concerning your treatment? I do not feel my mother (she has custody for now...ugh) is taking this seriously. Its very frustrating. Thanks for your help. You guys are truly an inspiration to me. Thanks. Angel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 In a message dated 7/9/2004 8:12:27 AM Central Daylight Time, garymattcohen@... writes: diagnosis I did nothing (like my docs told me and my family)! You need to feel confortable with a doc, and find out how they plan on monitoring his progression. Hi . Thanks for the response. We're just getting home from dr. My son is scheduled for biopsy on the 19th. The dr. is acting like this is no big deal and says that Cade will not have any diet restrictions. I feel that we SHOULD watch this rather closely and maybe even start fish oil, but dr. says it would not help. Could be that the dr. is breaking to my mother easily because she freaks out...maybe he wants to see the biopsy before suggesting restrictions, but he did not say that today. I just hope we get that judges ruling soon so that I can care for my son and teach him how to take care of himself and help this kidney last as long as it can. What do you all think? It seems we are catching this early, but is there really nothing we can do at this point? His protein is 1.6 as of last week. They did another urinalysis today but no results yet. Thanks, Angel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 In a message dated 7/9/2004 8:12:27 AM Central Daylight Time, garymattcohen@... writes: diagnosis I did nothing (like my docs told me and my family)! You need to feel confortable with a doc, and find out how they plan on monitoring his progression. Hi . Thanks for the response. We're just getting home from dr. My son is scheduled for biopsy on the 19th. The dr. is acting like this is no big deal and says that Cade will not have any diet restrictions. I feel that we SHOULD watch this rather closely and maybe even start fish oil, but dr. says it would not help. Could be that the dr. is breaking to my mother easily because she freaks out...maybe he wants to see the biopsy before suggesting restrictions, but he did not say that today. I just hope we get that judges ruling soon so that I can care for my son and teach him how to take care of himself and help this kidney last as long as it can. What do you all think? It seems we are catching this early, but is there really nothing we can do at this point? His protein is 1.6 as of last week. They did another urinalysis today but no results yet. Thanks, Angel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 In a message dated 7/9/2004 8:12:27 AM Central Daylight Time, garymattcohen@... writes: diagnosis I did nothing (like my docs told me and my family)! You need to feel confortable with a doc, and find out how they plan on monitoring his progression. Hi . Thanks for the response. We're just getting home from dr. My son is scheduled for biopsy on the 19th. The dr. is acting like this is no big deal and says that Cade will not have any diet restrictions. I feel that we SHOULD watch this rather closely and maybe even start fish oil, but dr. says it would not help. Could be that the dr. is breaking to my mother easily because she freaks out...maybe he wants to see the biopsy before suggesting restrictions, but he did not say that today. I just hope we get that judges ruling soon so that I can care for my son and teach him how to take care of himself and help this kidney last as long as it can. What do you all think? It seems we are catching this early, but is there really nothing we can do at this point? His protein is 1.6 as of last week. They did another urinalysis today but no results yet. Thanks, Angel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 In a message dated 7/9/2004 8:56:14 AM Central Daylight Time, favors_ryan_w@... writes: As for doing things different I would have monitored it better to be aware of that bp elevation, and maybe some more preventative measures (ACE inhibs, fish oil). Hi . This is what I am thinking. You all have been really helpful..... Thanks, Angel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 Pierre, You have a great way with words. Thank you so much for taking the time to write this email. I cant thank you guys enough for teaching me about this disease and helping me to help my son. Hugs, Angel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 Pierre, You have a great way with words. Thank you so much for taking the time to write this email. I cant thank you guys enough for teaching me about this disease and helping me to help my son. Hugs, Angel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 Knowing everything that I know now, if I could do it all over again for myself, I would insist on much more vigorous blood pressure control at a much earlier point in the evolution of this thing for me, and I would put up with any side effects that it might cause. I would also probably ease up on sodium a lot earlier. Better blood pressure control, at any cost, might have bought me a few more years before needing dialysis. The main thing I didn't do that I should have was to get follow-up during the 1980's. I didn't actually see a doctor for about 10 years after they found that blood. But then, nobody at that time really felt that was needed. If I had, I'm pretty sure the high blood pressure would have been detected much, much sooner, instead of almost by accident, when it was already very high. There were no ACE inhibitors or angiotensin II receptor blockers back then either, so everything was really very different than it is now. I also wouldn't waste of couple of years trying to keep BP under control using lifestyle modifications instead of drugs, as I did in the early 1990's. I wouldn't say I would go on any diet, because I already never was much of a protein eater. You can't go lower than low protein, and that's pretty much what I ate anyway. I would guess that you wouldn't want to go too low with protein in the case of a child either, since it's needed for proper growth. Kids need protein and they burn a lot of calories. I see no need to limit anything else, unless there's some specific reason to do so. Sodium would depend on the blood pressure. But, I was 23 or 24 when blood was first detected in my urine - already an adult. It's a lot harder to make treatment decisions with respect to a child, because there's a long time ahead, and who knows what can happen in the longer term with various drugs. IgAN remains one of those diseases with no known definitive treatment, but many possible treatments based on somewhat vague or marginal results. It would be so much easier to operate of group like this if there were any definitive answers. Pierre Re: A little advice.. > In a message dated 7/9/2004 8:12:27 AM Central Daylight Time, > garymattcohen@... writes: > diagnosis I did nothing (like my docs told me and my family)! > > You need to feel confortable with a doc, and find out how they plan on > monitoring his progression. > Hi . Thanks for the response. We're just getting home from dr. My son > is scheduled for biopsy on the 19th. The dr. is acting like this is no big > deal and says that Cade will not have any diet restrictions. I feel that we > SHOULD watch this rather closely and maybe even start fish oil, but dr. says it > would not help. Could be that the dr. is breaking to my mother easily because > she freaks out...maybe he wants to see the biopsy before suggesting > restrictions, but he did not say that today. > > I just hope we get that judges ruling soon so that I can care for my son and > teach him how to take care of himself and help this kidney last as long as it > can. > > What do you all think? It seems we are catching this early, but is there > really nothing we can do at this point? > > His protein is 1.6 as of last week. They did another urinalysis today but no > results yet. > > Thanks, > Angel > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 Knowing everything that I know now, if I could do it all over again for myself, I would insist on much more vigorous blood pressure control at a much earlier point in the evolution of this thing for me, and I would put up with any side effects that it might cause. I would also probably ease up on sodium a lot earlier. Better blood pressure control, at any cost, might have bought me a few more years before needing dialysis. The main thing I didn't do that I should have was to get follow-up during the 1980's. I didn't actually see a doctor for about 10 years after they found that blood. But then, nobody at that time really felt that was needed. If I had, I'm pretty sure the high blood pressure would have been detected much, much sooner, instead of almost by accident, when it was already very high. There were no ACE inhibitors or angiotensin II receptor blockers back then either, so everything was really very different than it is now. I also wouldn't waste of couple of years trying to keep BP under control using lifestyle modifications instead of drugs, as I did in the early 1990's. I wouldn't say I would go on any diet, because I already never was much of a protein eater. You can't go lower than low protein, and that's pretty much what I ate anyway. I would guess that you wouldn't want to go too low with protein in the case of a child either, since it's needed for proper growth. Kids need protein and they burn a lot of calories. I see no need to limit anything else, unless there's some specific reason to do so. Sodium would depend on the blood pressure. But, I was 23 or 24 when blood was first detected in my urine - already an adult. It's a lot harder to make treatment decisions with respect to a child, because there's a long time ahead, and who knows what can happen in the longer term with various drugs. IgAN remains one of those diseases with no known definitive treatment, but many possible treatments based on somewhat vague or marginal results. It would be so much easier to operate of group like this if there were any definitive answers. Pierre Re: A little advice.. > In a message dated 7/9/2004 8:12:27 AM Central Daylight Time, > garymattcohen@... writes: > diagnosis I did nothing (like my docs told me and my family)! > > You need to feel confortable with a doc, and find out how they plan on > monitoring his progression. > Hi . Thanks for the response. We're just getting home from dr. My son > is scheduled for biopsy on the 19th. The dr. is acting like this is no big > deal and says that Cade will not have any diet restrictions. I feel that we > SHOULD watch this rather closely and maybe even start fish oil, but dr. says it > would not help. Could be that the dr. is breaking to my mother easily because > she freaks out...maybe he wants to see the biopsy before suggesting > restrictions, but he did not say that today. > > I just hope we get that judges ruling soon so that I can care for my son and > teach him how to take care of himself and help this kidney last as long as it > can. > > What do you all think? It seems we are catching this early, but is there > really nothing we can do at this point? > > His protein is 1.6 as of last week. They did another urinalysis today but no > results yet. > > Thanks, > Angel > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 Knowing everything that I know now, if I could do it all over again for myself, I would insist on much more vigorous blood pressure control at a much earlier point in the evolution of this thing for me, and I would put up with any side effects that it might cause. I would also probably ease up on sodium a lot earlier. Better blood pressure control, at any cost, might have bought me a few more years before needing dialysis. The main thing I didn't do that I should have was to get follow-up during the 1980's. I didn't actually see a doctor for about 10 years after they found that blood. But then, nobody at that time really felt that was needed. If I had, I'm pretty sure the high blood pressure would have been detected much, much sooner, instead of almost by accident, when it was already very high. There were no ACE inhibitors or angiotensin II receptor blockers back then either, so everything was really very different than it is now. I also wouldn't waste of couple of years trying to keep BP under control using lifestyle modifications instead of drugs, as I did in the early 1990's. I wouldn't say I would go on any diet, because I already never was much of a protein eater. You can't go lower than low protein, and that's pretty much what I ate anyway. I would guess that you wouldn't want to go too low with protein in the case of a child either, since it's needed for proper growth. Kids need protein and they burn a lot of calories. I see no need to limit anything else, unless there's some specific reason to do so. Sodium would depend on the blood pressure. But, I was 23 or 24 when blood was first detected in my urine - already an adult. It's a lot harder to make treatment decisions with respect to a child, because there's a long time ahead, and who knows what can happen in the longer term with various drugs. IgAN remains one of those diseases with no known definitive treatment, but many possible treatments based on somewhat vague or marginal results. It would be so much easier to operate of group like this if there were any definitive answers. Pierre Re: A little advice.. > In a message dated 7/9/2004 8:12:27 AM Central Daylight Time, > garymattcohen@... writes: > diagnosis I did nothing (like my docs told me and my family)! > > You need to feel confortable with a doc, and find out how they plan on > monitoring his progression. > Hi . Thanks for the response. We're just getting home from dr. My son > is scheduled for biopsy on the 19th. The dr. is acting like this is no big > deal and says that Cade will not have any diet restrictions. I feel that we > SHOULD watch this rather closely and maybe even start fish oil, but dr. says it > would not help. Could be that the dr. is breaking to my mother easily because > she freaks out...maybe he wants to see the biopsy before suggesting > restrictions, but he did not say that today. > > I just hope we get that judges ruling soon so that I can care for my son and > teach him how to take care of himself and help this kidney last as long as it > can. > > What do you all think? It seems we are catching this early, but is there > really nothing we can do at this point? > > His protein is 1.6 as of last week. They did another urinalysis today but no > results yet. > > Thanks, > Angel > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 Pierre, I agree 110%, I think THE MOST IMPORTANT THING is blood pressure control. Nothing else is a for sure thing or slows the progress of IgAN, like the correct BP. Very good advice. Harley Re: A little advice.. > > > > In a message dated 7/9/2004 8:12:27 AM Central Daylight Time, > > garymattcohen@... writes: > > diagnosis I did nothing (like my docs told me and my family)! > > > > You need to feel confortable with a doc, and find out how they plan on > > monitoring his progression. > > Hi . Thanks for the response. We're just getting home from dr. My > son > > is scheduled for biopsy on the 19th. The dr. is acting like this is no > big > > deal and says that Cade will not have any diet restrictions. I feel that > we > > SHOULD watch this rather closely and maybe even start fish oil, but dr. > says it > > would not help. Could be that the dr. is breaking to my mother easily > because > > she freaks out...maybe he wants to see the biopsy before suggesting > > restrictions, but he did not say that today. > > > > I just hope we get that judges ruling soon so that I can care for my son > and > > teach him how to take care of himself and help this kidney last as long as > it > > can. > > > > What do you all think? It seems we are catching this early, but is there > > really nothing we can do at this point? > > > > His protein is 1.6 as of last week. They did another urinalysis today but > no > > results yet. > > > > Thanks, > > Angel > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 Pierre, I agree 110%, I think THE MOST IMPORTANT THING is blood pressure control. Nothing else is a for sure thing or slows the progress of IgAN, like the correct BP. Very good advice. Harley Re: A little advice.. > > > > In a message dated 7/9/2004 8:12:27 AM Central Daylight Time, > > garymattcohen@... writes: > > diagnosis I did nothing (like my docs told me and my family)! > > > > You need to feel confortable with a doc, and find out how they plan on > > monitoring his progression. > > Hi . Thanks for the response. We're just getting home from dr. My > son > > is scheduled for biopsy on the 19th. The dr. is acting like this is no > big > > deal and says that Cade will not have any diet restrictions. I feel that > we > > SHOULD watch this rather closely and maybe even start fish oil, but dr. > says it > > would not help. Could be that the dr. is breaking to my mother easily > because > > she freaks out...maybe he wants to see the biopsy before suggesting > > restrictions, but he did not say that today. > > > > I just hope we get that judges ruling soon so that I can care for my son > and > > teach him how to take care of himself and help this kidney last as long as > it > > can. > > > > What do you all think? It seems we are catching this early, but is there > > really nothing we can do at this point? > > > > His protein is 1.6 as of last week. They did another urinalysis today but > no > > results yet. > > > > Thanks, > > Angel > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 Pierre, I agree 110%, I think THE MOST IMPORTANT THING is blood pressure control. Nothing else is a for sure thing or slows the progress of IgAN, like the correct BP. Very good advice. Harley Re: A little advice.. > > > > In a message dated 7/9/2004 8:12:27 AM Central Daylight Time, > > garymattcohen@... writes: > > diagnosis I did nothing (like my docs told me and my family)! > > > > You need to feel confortable with a doc, and find out how they plan on > > monitoring his progression. > > Hi . Thanks for the response. We're just getting home from dr. My > son > > is scheduled for biopsy on the 19th. The dr. is acting like this is no > big > > deal and says that Cade will not have any diet restrictions. I feel that > we > > SHOULD watch this rather closely and maybe even start fish oil, but dr. > says it > > would not help. Could be that the dr. is breaking to my mother easily > because > > she freaks out...maybe he wants to see the biopsy before suggesting > > restrictions, but he did not say that today. > > > > I just hope we get that judges ruling soon so that I can care for my son > and > > teach him how to take care of himself and help this kidney last as long as > it > > can. > > > > What do you all think? It seems we are catching this early, but is there > > really nothing we can do at this point? > > > > His protein is 1.6 as of last week. They did another urinalysis today but > no > > results yet. > > > > Thanks, > > Angel > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 Hi Angel, It is hard to say what your doctor is thinking. He may be waiting for the biopsy results to see if there are any crescents which would indicate a greater need for earlier intervention. If his creatinine level is normal, it may be that the Neph just does not want to subject him to taking meds? I hope the custody battle ends soon for all of you! In a message dated 7/9/2004 5:05:22 PM Eastern Daylight Time, saturn70006@... writes: >In a message dated 7/9/2004 8:12:27 AM Central Daylight Time, >garymattcohen@... writes: >diagnosis I did nothing (like my docs told me and my family)! > >You need to feel confortable with a doc, and find out how they plan on >monitoring his progression. >Hi . Thanks for the response. We're just getting home from dr. My son >is scheduled for biopsy on the 19th. The dr. is acting like this is no big >deal and says that Cade will not have any diet restrictions. I feel that we >SHOULD watch this rather closely and maybe even start fish oil, but dr. says it >would not help. Could be that the dr. is breaking to my mother easily because >she freaks out...maybe he wants to see the biopsy before suggesting >restrictions, but he did not say that today. > >I just hope we get that judges ruling soon so that I can care for my son and >teach him how to take care of himself and help this kidney last as long as it >can. > >What do you all think? It seems we are catching this early, but is there >really nothing we can do at this point? > >His protein is 1.6 as of last week. They did another urinalysis today but no >results yet. > >Thanks, >Angel > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 Hi Angel, It is hard to say what your doctor is thinking. He may be waiting for the biopsy results to see if there are any crescents which would indicate a greater need for earlier intervention. If his creatinine level is normal, it may be that the Neph just does not want to subject him to taking meds? I hope the custody battle ends soon for all of you! In a message dated 7/9/2004 5:05:22 PM Eastern Daylight Time, saturn70006@... writes: >In a message dated 7/9/2004 8:12:27 AM Central Daylight Time, >garymattcohen@... writes: >diagnosis I did nothing (like my docs told me and my family)! > >You need to feel confortable with a doc, and find out how they plan on >monitoring his progression. >Hi . Thanks for the response. We're just getting home from dr. My son >is scheduled for biopsy on the 19th. The dr. is acting like this is no big >deal and says that Cade will not have any diet restrictions. I feel that we >SHOULD watch this rather closely and maybe even start fish oil, but dr. says it >would not help. Could be that the dr. is breaking to my mother easily because >she freaks out...maybe he wants to see the biopsy before suggesting >restrictions, but he did not say that today. > >I just hope we get that judges ruling soon so that I can care for my son and >teach him how to take care of himself and help this kidney last as long as it >can. > >What do you all think? It seems we are catching this early, but is there >really nothing we can do at this point? > >His protein is 1.6 as of last week. They did another urinalysis today but no >results yet. > >Thanks, >Angel > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 Hi Angel, It is hard to say what your doctor is thinking. He may be waiting for the biopsy results to see if there are any crescents which would indicate a greater need for earlier intervention. If his creatinine level is normal, it may be that the Neph just does not want to subject him to taking meds? I hope the custody battle ends soon for all of you! In a message dated 7/9/2004 5:05:22 PM Eastern Daylight Time, saturn70006@... writes: >In a message dated 7/9/2004 8:12:27 AM Central Daylight Time, >garymattcohen@... writes: >diagnosis I did nothing (like my docs told me and my family)! > >You need to feel confortable with a doc, and find out how they plan on >monitoring his progression. >Hi . Thanks for the response. We're just getting home from dr. My son >is scheduled for biopsy on the 19th. The dr. is acting like this is no big >deal and says that Cade will not have any diet restrictions. I feel that we >SHOULD watch this rather closely and maybe even start fish oil, but dr. says it >would not help. Could be that the dr. is breaking to my mother easily because >she freaks out...maybe he wants to see the biopsy before suggesting >restrictions, but he did not say that today. > >I just hope we get that judges ruling soon so that I can care for my son and >teach him how to take care of himself and help this kidney last as long as it >can. > >What do you all think? It seems we are catching this early, but is there >really nothing we can do at this point? > >His protein is 1.6 as of last week. They did another urinalysis today but no >results yet. > >Thanks, >Angel > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 Pierre, just wanted to thank you for this down to heart message. When a person can retrospectively tell others " If I could do it all over again for myself.... " it really hits home. Especially written from someone who has experienced the long term effects of Ig A. I think many of us will learn from your personal entry. Thank you again. Bonnie harley wrote:Pierre, I agree 110%, I think THE MOST IMPORTANT THING is blood pressure control. Nothing else is a for sure thing or slows the progress of IgAN, like the correct BP. Very good advice. Harley Re: A little advice.. > > > > In a message dated 7/9/2004 8:12:27 AM Central Daylight Time, > > garymattcohen@... writes: > > diagnosis I did nothing (like my docs told me and my family)! > > > > You need to feel confortable with a doc, and find out how they plan on > > monitoring his progression. > > Hi . Thanks for the response. We're just getting home from dr. My > son > > is scheduled for biopsy on the 19th. The dr. is acting like this is no > big > > deal and says that Cade will not have any diet restrictions. I feel that > we > > SHOULD watch this rather closely and maybe even start fish oil, but dr. > says it > > would not help. Could be that the dr. is breaking to my mother easily > because > > she freaks out...maybe he wants to see the biopsy before suggesting > > restrictions, but he did not say that today. > > > > I just hope we get that judges ruling soon so that I can care for my son > and > > teach him how to take care of himself and help this kidney last as long as > it > > can. > > > > What do you all think? It seems we are catching this early, but is there > > really nothing we can do at this point? > > > > His protein is 1.6 as of last week. They did another urinalysis today but > no > > results yet. > > > > Thanks, > > Angel > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 Pierre, just wanted to thank you for this down to heart message. When a person can retrospectively tell others " If I could do it all over again for myself.... " it really hits home. Especially written from someone who has experienced the long term effects of Ig A. I think many of us will learn from your personal entry. Thank you again. Bonnie harley wrote:Pierre, I agree 110%, I think THE MOST IMPORTANT THING is blood pressure control. Nothing else is a for sure thing or slows the progress of IgAN, like the correct BP. Very good advice. Harley Re: A little advice.. > > > > In a message dated 7/9/2004 8:12:27 AM Central Daylight Time, > > garymattcohen@... writes: > > diagnosis I did nothing (like my docs told me and my family)! > > > > You need to feel confortable with a doc, and find out how they plan on > > monitoring his progression. > > Hi . Thanks for the response. We're just getting home from dr. My > son > > is scheduled for biopsy on the 19th. The dr. is acting like this is no > big > > deal and says that Cade will not have any diet restrictions. I feel that > we > > SHOULD watch this rather closely and maybe even start fish oil, but dr. > says it > > would not help. Could be that the dr. is breaking to my mother easily > because > > she freaks out...maybe he wants to see the biopsy before suggesting > > restrictions, but he did not say that today. > > > > I just hope we get that judges ruling soon so that I can care for my son > and > > teach him how to take care of himself and help this kidney last as long as > it > > can. > > > > What do you all think? It seems we are catching this early, but is there > > really nothing we can do at this point? > > > > His protein is 1.6 as of last week. They did another urinalysis today but > no > > results yet. > > > > Thanks, > > Angel > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 Pierre, just wanted to thank you for this down to heart message. When a person can retrospectively tell others " If I could do it all over again for myself.... " it really hits home. Especially written from someone who has experienced the long term effects of Ig A. I think many of us will learn from your personal entry. Thank you again. Bonnie harley wrote:Pierre, I agree 110%, I think THE MOST IMPORTANT THING is blood pressure control. Nothing else is a for sure thing or slows the progress of IgAN, like the correct BP. Very good advice. Harley Re: A little advice.. > > > > In a message dated 7/9/2004 8:12:27 AM Central Daylight Time, > > garymattcohen@... writes: > > diagnosis I did nothing (like my docs told me and my family)! > > > > You need to feel confortable with a doc, and find out how they plan on > > monitoring his progression. > > Hi . Thanks for the response. We're just getting home from dr. My > son > > is scheduled for biopsy on the 19th. The dr. is acting like this is no > big > > deal and says that Cade will not have any diet restrictions. I feel that > we > > SHOULD watch this rather closely and maybe even start fish oil, but dr. > says it > > would not help. Could be that the dr. is breaking to my mother easily > because > > she freaks out...maybe he wants to see the biopsy before suggesting > > restrictions, but he did not say that today. > > > > I just hope we get that judges ruling soon so that I can care for my son > and > > teach him how to take care of himself and help this kidney last as long as > it > > can. > > > > What do you all think? It seems we are catching this early, but is there > > really nothing we can do at this point? > > > > His protein is 1.6 as of last week. They did another urinalysis today but > no > > results yet. > > > > Thanks, > > Angel > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2004 Report Share Posted July 11, 2004 Thanks Pierre. This post is a keeper. Cy Re: A little advice.. > > > > In a message dated 7/9/2004 8:12:27 AM Central Daylight Time, > > garymattcohen@... writes: > > diagnosis I did nothing (like my docs told me and my family)! > > > > You need to feel confortable with a doc, and find out how they plan on > > monitoring his progression. > > Hi . Thanks for the response. We're just getting home from dr. My > son > > is scheduled for biopsy on the 19th. The dr. is acting like this is no > big > > deal and says that Cade will not have any diet restrictions. I feel that > we > > SHOULD watch this rather closely and maybe even start fish oil, but dr. > says it > > would not help. Could be that the dr. is breaking to my mother easily > because > > she freaks out...maybe he wants to see the biopsy before suggesting > > restrictions, but he did not say that today. > > > > I just hope we get that judges ruling soon so that I can care for my son > and > > teach him how to take care of himself and help this kidney last as long as > it > > can. > > > > What do you all think? It seems we are catching this early, but is there > > really nothing we can do at this point? > > > > His protein is 1.6 as of last week. They did another urinalysis today but > no > > results yet. > > > > Thanks, > > Angel > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2004 Report Share Posted July 11, 2004 Thanks Pierre. This post is a keeper. Cy Re: A little advice.. > > > > In a message dated 7/9/2004 8:12:27 AM Central Daylight Time, > > garymattcohen@... writes: > > diagnosis I did nothing (like my docs told me and my family)! > > > > You need to feel confortable with a doc, and find out how they plan on > > monitoring his progression. > > Hi . Thanks for the response. We're just getting home from dr. My > son > > is scheduled for biopsy on the 19th. The dr. is acting like this is no > big > > deal and says that Cade will not have any diet restrictions. I feel that > we > > SHOULD watch this rather closely and maybe even start fish oil, but dr. > says it > > would not help. Could be that the dr. is breaking to my mother easily > because > > she freaks out...maybe he wants to see the biopsy before suggesting > > restrictions, but he did not say that today. > > > > I just hope we get that judges ruling soon so that I can care for my son > and > > teach him how to take care of himself and help this kidney last as long as > it > > can. > > > > What do you all think? It seems we are catching this early, but is there > > really nothing we can do at this point? > > > > His protein is 1.6 as of last week. They did another urinalysis today but > no > > results yet. > > > > Thanks, > > Angel > > > > > > Quote Link to comment Share on other sites More sharing options...
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