Guest guest Posted March 31, 2002 Report Share Posted March 31, 2002 Janet, Just when you thought things were getting easier Hope the blood pressure gets sorted out and you get to the bottom of these kidney problems. Take care Elaine, mum to Elise (9yrs) & Jack (4.5yrs) CHaRGE Dumfries, Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2002 Report Share Posted March 31, 2002 Janet, Just when you thought things were getting easier Hope the blood pressure gets sorted out and you get to the bottom of these kidney problems. Take care Elaine, mum to Elise (9yrs) & Jack (4.5yrs) CHaRGE Dumfries, Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2002 Report Share Posted March 31, 2002 Janet, Just when you thought things were getting easier Hope the blood pressure gets sorted out and you get to the bottom of these kidney problems. Take care Elaine, mum to Elise (9yrs) & Jack (4.5yrs) CHaRGE Dumfries, Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2002 Report Share Posted March 31, 2002 Elaine, That's exactly what I was thinking! And here I thought his heart was the big issue. We'd been putting the kidney question on the back burner for a couple of years now because he wasn't really showing any symptoms. has been fairly stable since 1995 when he had his last open heart surgery. I guess he was a bit overdue! Thanks. Janet Mom to even more!!! We're at 8 this weekend! (We are the *hotline* home for the Department of Social Services, so when runaways turn up on the weekend, they end up with us!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2002 Report Share Posted March 31, 2002 Elaine, That's exactly what I was thinking! And here I thought his heart was the big issue. We'd been putting the kidney question on the back burner for a couple of years now because he wasn't really showing any symptoms. has been fairly stable since 1995 when he had his last open heart surgery. I guess he was a bit overdue! Thanks. Janet Mom to even more!!! We're at 8 this weekend! (We are the *hotline* home for the Department of Social Services, so when runaways turn up on the weekend, they end up with us!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2002 Report Share Posted March 31, 2002 Elaine, That's exactly what I was thinking! And here I thought his heart was the big issue. We'd been putting the kidney question on the back burner for a couple of years now because he wasn't really showing any symptoms. has been fairly stable since 1995 when he had his last open heart surgery. I guess he was a bit overdue! Thanks. Janet Mom to even more!!! We're at 8 this weekend! (We are the *hotline* home for the Department of Social Services, so when runaways turn up on the weekend, they end up with us!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2002 Report Share Posted March 31, 2002 , How would they check for that? He's had a renal ultrasound and a DMSA scan. His blood pressure, for now is fine (97/65) with him taking the analipril. I just worry about the potential of needing to remove the kidney. 's heart is doing well now, but as we all know, anaestesia (sp?) can be a big concern for our kids. Thanks. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2002 Report Share Posted March 31, 2002 , How would they check for that? He's had a renal ultrasound and a DMSA scan. His blood pressure, for now is fine (97/65) with him taking the analipril. I just worry about the potential of needing to remove the kidney. 's heart is doing well now, but as we all know, anaestesia (sp?) can be a big concern for our kids. Thanks. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2002 Report Share Posted March 31, 2002 , How would they check for that? He's had a renal ultrasound and a DMSA scan. His blood pressure, for now is fine (97/65) with him taking the analipril. I just worry about the potential of needing to remove the kidney. 's heart is doing well now, but as we all know, anaestesia (sp?) can be a big concern for our kids. Thanks. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2002 Report Share Posted March 31, 2002 Janet, Has justin ever been checked for polycistic kidney disease? This will cause the blood presure to go up. had it in his right kidney and it was removed before he was 2 years old, He also had other kidney problems and still does with the kidney he has. You might want to have him checked for this just to rule it out, I hope you get his blood pressure under control. mom to almost 8 years. kidney problems Hello everyone, had a DSMA scan, which we'd put off for a few years! The doctors sometimes made me feel that I was putting thru unnecessary testing. We saw the urologist today for the results of the scan and to also have an ultrasound. 's left kidney is only functioning at 17%. The right at 83%. 's blood pressure was 97/65 (his highest was 127/75) but he's on analipril now. If we want to determine whether his high blood pressure is from his kidney, and not his heart, we'd have to stop the analipril and then do some tests. We are seeing the Cardiologist in a couple of weeks. The urologist mentioned removing the kidney, but also said, that if the med is controlling the high blood pressure, we can let it be for now. We will see him again in 6 months. Thanks for listening. Janet Mom to even more!! We're at 7 kids this weekend! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2002 Report Share Posted March 31, 2002 Janet, Has justin ever been checked for polycistic kidney disease? This will cause the blood presure to go up. had it in his right kidney and it was removed before he was 2 years old, He also had other kidney problems and still does with the kidney he has. You might want to have him checked for this just to rule it out, I hope you get his blood pressure under control. mom to almost 8 years. kidney problems Hello everyone, had a DSMA scan, which we'd put off for a few years! The doctors sometimes made me feel that I was putting thru unnecessary testing. We saw the urologist today for the results of the scan and to also have an ultrasound. 's left kidney is only functioning at 17%. The right at 83%. 's blood pressure was 97/65 (his highest was 127/75) but he's on analipril now. If we want to determine whether his high blood pressure is from his kidney, and not his heart, we'd have to stop the analipril and then do some tests. We are seeing the Cardiologist in a couple of weeks. The urologist mentioned removing the kidney, but also said, that if the med is controlling the high blood pressure, we can let it be for now. We will see him again in 6 months. Thanks for listening. Janet Mom to even more!! We're at 7 kids this weekend! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2002 Report Share Posted March 31, 2002 Janet, Has justin ever been checked for polycistic kidney disease? This will cause the blood presure to go up. had it in his right kidney and it was removed before he was 2 years old, He also had other kidney problems and still does with the kidney he has. You might want to have him checked for this just to rule it out, I hope you get his blood pressure under control. mom to almost 8 years. kidney problems Hello everyone, had a DSMA scan, which we'd put off for a few years! The doctors sometimes made me feel that I was putting thru unnecessary testing. We saw the urologist today for the results of the scan and to also have an ultrasound. 's left kidney is only functioning at 17%. The right at 83%. 's blood pressure was 97/65 (his highest was 127/75) but he's on analipril now. If we want to determine whether his high blood pressure is from his kidney, and not his heart, we'd have to stop the analipril and then do some tests. We are seeing the Cardiologist in a couple of weeks. The urologist mentioned removing the kidney, but also said, that if the med is controlling the high blood pressure, we can let it be for now. We will see him again in 6 months. Thanks for listening. Janet Mom to even more!! We're at 7 kids this weekend! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2002 Report Share Posted March 31, 2002 Janet, Jack's also due for another DMSA scan in June(ish) as it's 3yrs since his last one. Fingers crossed that it's good news. Elaine, mum to Elise (9yrs) & Jack (4.5yrs) CHaRGE Dumfries, Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2002 Report Share Posted April 1, 2002 Elaine, Will definitely be thinking of Jack! Good Luck! Janet The house is finally settling down!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2002 Report Share Posted April 1, 2002 Elaine, Will definitely be thinking of Jack! Good Luck! Janet The house is finally settling down!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2002 Report Share Posted April 3, 2002 Sorry it has taken me so long to get back with you. They check for polycistic kidney disease through ultrasounds and they did VCUG on david and alot of blood work. did not have the high blood pressure form the disease and we were very greatful for that. I would ask the doctor to check for this just to rule this out, I would think they would not want to keep the kidney that is only working at 17% that could cause problems down the road. When they took 's kidney out it was functioning at less the 5% and he had to be on antibiotics until they took the kidney out due to infections. We are have a VCUG done on on May 21 to check for reflux disease they are going to do a ultrasound also to make sure the disease has not affected the othere kidney. I hope is doing better and starts to feel better soon we will keep him in our thoughts and prayers. mom to almost 8years. Re: kidney problems , How would they check for that? He's had a renal ultrasound and a DMSA scan. His blood pressure, for now is fine (97/65) with him taking the analipril. I just worry about the potential of needing to remove the kidney. 's heart is doing well now, but as we all know, anaestesia (sp?) can be a big concern for our kids. Thanks. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2002 Report Share Posted April 3, 2002 Sorry it has taken me so long to get back with you. They check for polycistic kidney disease through ultrasounds and they did VCUG on david and alot of blood work. did not have the high blood pressure form the disease and we were very greatful for that. I would ask the doctor to check for this just to rule this out, I would think they would not want to keep the kidney that is only working at 17% that could cause problems down the road. When they took 's kidney out it was functioning at less the 5% and he had to be on antibiotics until they took the kidney out due to infections. We are have a VCUG done on on May 21 to check for reflux disease they are going to do a ultrasound also to make sure the disease has not affected the othere kidney. I hope is doing better and starts to feel better soon we will keep him in our thoughts and prayers. mom to almost 8years. Re: kidney problems , How would they check for that? He's had a renal ultrasound and a DMSA scan. His blood pressure, for now is fine (97/65) with him taking the analipril. I just worry about the potential of needing to remove the kidney. 's heart is doing well now, but as we all know, anaestesia (sp?) can be a big concern for our kids. Thanks. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2002 Report Share Posted April 3, 2002 , Thanks for the reply about the kidneys. As luck would have it, we are in the process of changing pediatricians which will entail changing *ALL* of 's doctors! It is our choice to do this. Over the past 10 years, we have spread out among 4 hospitals following different doctors. has been fairly healthy by CHARGE standards for the past 5-6 years and I think we are coming into a very busy time now, and we are also preparing for adolescence. And with the kidney issue, we've got to get that under control. I think it will be helpful to have all of his doctors working out of the same hospital. We will condense our care at Boston's Children's Hospital. We have used specialists there before and are not concerned about reputations. But we are concerned about starting over. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2002 Report Share Posted April 3, 2002 , Thanks for the reply about the kidneys. As luck would have it, we are in the process of changing pediatricians which will entail changing *ALL* of 's doctors! It is our choice to do this. Over the past 10 years, we have spread out among 4 hospitals following different doctors. has been fairly healthy by CHARGE standards for the past 5-6 years and I think we are coming into a very busy time now, and we are also preparing for adolescence. And with the kidney issue, we've got to get that under control. I think it will be helpful to have all of his doctors working out of the same hospital. We will condense our care at Boston's Children's Hospital. We have used specialists there before and are not concerned about reputations. But we are concerned about starting over. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 My daughter goes to school at Perkins. I've had questions about her kidneys for years (especially since periodic wetting incidents started two years ago). Please let me know what kidney specialist you see - and like. We live in a small midwestern city and try to have all of the specialist appointments done in Boston. Thanks. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 My daughter goes to school at Perkins. I've had questions about her kidneys for years (especially since periodic wetting incidents started two years ago). Please let me know what kidney specialist you see - and like. We live in a small midwestern city and try to have all of the specialist appointments done in Boston. Thanks. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 Patty had many bladder infections. They didn't find the reflux issues until she was around 5 or 6. By that time she had much damage to one of her kidneys from it. She was on an antibiotic as a prophylactic but because of the damage that one kidney has little function. They stopped the infections for the other and she did grow out of the reflux. Her left kidney is now twice the size because it has taken over for the right. Everyone with CHARGE should have a VCUG done, and not just once. Her blood pressure is fine though. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 Patty had many bladder infections. They didn't find the reflux issues until she was around 5 or 6. By that time she had much damage to one of her kidneys from it. She was on an antibiotic as a prophylactic but because of the damage that one kidney has little function. They stopped the infections for the other and she did grow out of the reflux. Her left kidney is now twice the size because it has taken over for the right. Everyone with CHARGE should have a VCUG done, and not just once. Her blood pressure is fine though. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 Martha, I have been reading the kidney info with interest. My Mark 18 is still having trouble with incontinence. He uses the bathroom but leaks all day and night long and now has to wear padding. This complicates EVERYTHING! HE has had multiple tests which show nothing wrong structurally. I keep hoping that someone might touch on what it could be. I really does sadden me he still has this problem. His started about 2 1/2 years ago. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 Martha, I have been reading the kidney info with interest. My Mark 18 is still having trouble with incontinence. He uses the bathroom but leaks all day and night long and now has to wear padding. This complicates EVERYTHING! HE has had multiple tests which show nothing wrong structurally. I keep hoping that someone might touch on what it could be. I really does sadden me he still has this problem. His started about 2 1/2 years ago. Quote Link to comment Share on other sites More sharing options...
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