Guest guest Posted January 8, 2002 Report Share Posted January 8, 2002 Hi Sara, My name is Cari and my son has been living with JDMS for 3 years this month. He is doing remarkably well. He will be 6 on Jan. 30th. How old is your Shelby? I have a Shelby too. She will be 10 on Jan. 30th. A group for parents of children with JDMS would be very helpful. I have been corresonding with the amazing people on this site for almost 3 years. With children, who have learned to live with this disease, I find them to not be very verbal about how they are feeling. In 's case, he doesn't remember a time when he didn't have it so his " normal " is a little skewed. It is hard to get a handle on how is feeling compared to yesterday, or last week, or before he went out and played in 30 degree weather, etc.... I have found the adults on this site to be invaluable as far as being able to bounce different symptoms off of them and then getting the feedback on how they feel. They gave me an insight into the disease that can not. They are 's " voice " for me. He insists he is " fine " even when he has been laying on the floor, unmoving for a couple of hours. 's Dr. is very receptive to what the friends on my yahoogroups site have to say on different things that have come up. Where do you live? How is Shelby doing? What meds is she on? Looking forward to getting to know you and your Shelby, and welcome. Cari > >Reply-To: OurMyositis >To: OurMyositis >Subject: New here >Date: Tue, 08 Jan 2002 01:32:44 -0000 > >Hi! My name is Sara. My daughter, Shelby, has been living with JDMS >for almost 2 years. I wondered if there was much discussion from >parents of children with JDMS. I've made some new friends through my >web site, but wanted a central spot for everyone to be able to keep >in touch. Would you suggest I start a new group .. or ?? Help! > >I've done a bit of browsing through messages so far, everyone seems >really nice. > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2004 Report Share Posted February 14, 2004 ***Did your son suffer any kind of physical trauma from the moped accident? It's kind of strange, but maybe that triggered what we commonly call a flare-up of the IgAN. It's kind of strange, but maybe that triggered what we commonly call a flare-up of the IgAN. . *** The only complaint he had about the accident was his back started hurting about an hour after the accident. Other than that, he had no complaints at all. There is no doubt in my mind that this disease has been here for awhile, I was mainly just wondering if the accident could have caused the *flare-up*. If 5 of the 15 glomeruli were scarred........what does that mean? Is that a lot or just the beginning......or can you even tell with those #'s? Sorry for all the questions. His Nephrologist has basically left us out in left field with this. He said to go home and let it all soak in, then he'd discuss things with us in a month when he goes back. ARGH! I'm really not happy with the way he's left us hanging so to speak. <sigh> Thanks so much for your response, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2004 Report Share Posted February 14, 2004 ***Did your son suffer any kind of physical trauma from the moped accident? It's kind of strange, but maybe that triggered what we commonly call a flare-up of the IgAN. It's kind of strange, but maybe that triggered what we commonly call a flare-up of the IgAN. . *** The only complaint he had about the accident was his back started hurting about an hour after the accident. Other than that, he had no complaints at all. There is no doubt in my mind that this disease has been here for awhile, I was mainly just wondering if the accident could have caused the *flare-up*. If 5 of the 15 glomeruli were scarred........what does that mean? Is that a lot or just the beginning......or can you even tell with those #'s? Sorry for all the questions. His Nephrologist has basically left us out in left field with this. He said to go home and let it all soak in, then he'd discuss things with us in a month when he goes back. ARGH! I'm really not happy with the way he's left us hanging so to speak. <sigh> Thanks so much for your response, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2004 Report Share Posted February 14, 2004 ***Did your son suffer any kind of physical trauma from the moped accident? It's kind of strange, but maybe that triggered what we commonly call a flare-up of the IgAN. It's kind of strange, but maybe that triggered what we commonly call a flare-up of the IgAN. . *** The only complaint he had about the accident was his back started hurting about an hour after the accident. Other than that, he had no complaints at all. There is no doubt in my mind that this disease has been here for awhile, I was mainly just wondering if the accident could have caused the *flare-up*. If 5 of the 15 glomeruli were scarred........what does that mean? Is that a lot or just the beginning......or can you even tell with those #'s? Sorry for all the questions. His Nephrologist has basically left us out in left field with this. He said to go home and let it all soak in, then he'd discuss things with us in a month when he goes back. ARGH! I'm really not happy with the way he's left us hanging so to speak. <sigh> Thanks so much for your response, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2004 Report Share Posted February 14, 2004 what is bilirubin?????????,,,,,,,,,crystal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2004 Report Share Posted February 14, 2004 Hi . I just read your email, but I don't have time for a long answer right now, as I have to leave for my dialysis. Here are some idea I'm just throwing out. That's quite a coincidence that he would get kidney disease at the same time as an accident like that. I remember when they first found blood in my urine, I assumed it was from a blow to my back I got from playing soccer the week before. In my case, it seems it really was just a coincidence. In your son's case, if the biopsy found IgAN, we have to assume he does have IgAN, as the pathological signs of IgAN do take a while to develop in the kidneys. He probably already had it for some time, if 5 out 15 glomeruli are sclerosed (scarred, as it appears from your description), without anyone knowing it was happening (often, there are just no symptoms that would lead anyone to suspect it at all, until there's a flare-up with visible blood in the urine. By that time, it's possible to have already lost some kidney function (not necessarily though). Did your son suffer any kind of physical trauma from the moped accident? It's kind of strange, but maybe that triggered what we commonly call a flare-up of the IgAN. Yes, high cholesterol is often a feature of IgAN. However, bilirubin, as far as I know (and I'm just a patient, not a doctor), if elevated, usually indicates a liver problem, or a blocked bile duct. It's not really a feature of IgAN. Any chance he could have an injury in there from the accident? I'm sort of out in left field with this, but there's a very remote chance that if he did, it might actually make the IgAN more apparent than it might otherwise be (but that's not what would have caused the scarring they found in the biopsy - too soon). Vasotec is thought to help lower proteinuria and prevent or slow the progression of this kidney disease. They commonly prescribe it (or any number of similar drugs) nowadays even if the blood pressure isn't high. Pierre New Here > Hi! > I just joined this list. My 13 year old son was diagnosed 4 days ago. There > is so much to learn and I'm so confused about it all. > I do have a question or maybe just wanting your opinion...... > In Sept my son was on his moped and ran into a car that ran a stop sign. He > walked away from the accident with a couple minor bruises. We took him to the > ER to get checked out, just in case. The doctor took a urine sample and came > back in saying there were traces of blood in his urine so they did a CAT > scan. We were sent home and the Radiologist called the next day saying the CAT > scan showed bruising to the kidney but no apparant rips or tears in the kidney. > He went to the Family doctor weekly to have his urine checked. After 3 weeks > with no improvement, the Family doctor sent him to a Urologist. The > Urologist did a cystoscopy (sp???) and everything came out fine. After many weeks of > blood work, urine tests and doctors visits they decided to send him to a > Nephrologist. The Nephrologist was stumped and ended up saying to give it a month > to see if there was any improvements. We returned a month later, with no > improvements. His urine was getting darker and darker with lots of Protein. The > Nephrologist finally ordered a kidney biopsy. We were told Tuesday that he > has IgA. It was a shock since we thought all along this was trauma to the > kidney from the accident. > He said 5 of the 15 cells in the biopsy were dead. What does that mean??? > Also, from what I've been reading, most of the time IgA shows itself after > the flu or some sort of illness. My son has never even been on an antibiotic or > had an ear infection before. He's had the Chicken Pox 11 years ago and > that's it. Could the accident have caused Disease to show itself?? His urine has > always been normal looking, including the night of the accident, but 2 days > later it started getting darker and darker until now it looks like black coffee. > He has another follow up appointment in 1 month. The Nephrologist has not > went over any type of diet or restrictions. He did put him on Vasotec for blood > pressure although his blood pressure isn't high. I'm assuming this is a > preventative?? Also, in all the blood tests he's had, his cholesterol is always > high. Is this normal with the disease? Another thing that has me worried with > the blood tests is that his bilirubin levels are high. None of the doctors > have commented on that. When I asked his Neprologist this last week he said > he'd look into it and get back with me. I can't remember the exact numbers, but > if the normal range of bilirubin was like 0.2 through 0.8, my sons was like > 4.3 which is extremely high imo. Does that have something to do with IgA also? > > Sorry for all the questions, I just have no clue where to start right now and > am still somewhat in a state of shock. > > Thanks so much, > in IN > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2004 Report Share Posted February 14, 2004 Hi . I just read your email, but I don't have time for a long answer right now, as I have to leave for my dialysis. Here are some idea I'm just throwing out. That's quite a coincidence that he would get kidney disease at the same time as an accident like that. I remember when they first found blood in my urine, I assumed it was from a blow to my back I got from playing soccer the week before. In my case, it seems it really was just a coincidence. In your son's case, if the biopsy found IgAN, we have to assume he does have IgAN, as the pathological signs of IgAN do take a while to develop in the kidneys. He probably already had it for some time, if 5 out 15 glomeruli are sclerosed (scarred, as it appears from your description), without anyone knowing it was happening (often, there are just no symptoms that would lead anyone to suspect it at all, until there's a flare-up with visible blood in the urine. By that time, it's possible to have already lost some kidney function (not necessarily though). Did your son suffer any kind of physical trauma from the moped accident? It's kind of strange, but maybe that triggered what we commonly call a flare-up of the IgAN. Yes, high cholesterol is often a feature of IgAN. However, bilirubin, as far as I know (and I'm just a patient, not a doctor), if elevated, usually indicates a liver problem, or a blocked bile duct. It's not really a feature of IgAN. Any chance he could have an injury in there from the accident? I'm sort of out in left field with this, but there's a very remote chance that if he did, it might actually make the IgAN more apparent than it might otherwise be (but that's not what would have caused the scarring they found in the biopsy - too soon). Vasotec is thought to help lower proteinuria and prevent or slow the progression of this kidney disease. They commonly prescribe it (or any number of similar drugs) nowadays even if the blood pressure isn't high. Pierre New Here > Hi! > I just joined this list. My 13 year old son was diagnosed 4 days ago. There > is so much to learn and I'm so confused about it all. > I do have a question or maybe just wanting your opinion...... > In Sept my son was on his moped and ran into a car that ran a stop sign. He > walked away from the accident with a couple minor bruises. We took him to the > ER to get checked out, just in case. The doctor took a urine sample and came > back in saying there were traces of blood in his urine so they did a CAT > scan. We were sent home and the Radiologist called the next day saying the CAT > scan showed bruising to the kidney but no apparant rips or tears in the kidney. > He went to the Family doctor weekly to have his urine checked. After 3 weeks > with no improvement, the Family doctor sent him to a Urologist. The > Urologist did a cystoscopy (sp???) and everything came out fine. After many weeks of > blood work, urine tests and doctors visits they decided to send him to a > Nephrologist. The Nephrologist was stumped and ended up saying to give it a month > to see if there was any improvements. We returned a month later, with no > improvements. His urine was getting darker and darker with lots of Protein. The > Nephrologist finally ordered a kidney biopsy. We were told Tuesday that he > has IgA. It was a shock since we thought all along this was trauma to the > kidney from the accident. > He said 5 of the 15 cells in the biopsy were dead. What does that mean??? > Also, from what I've been reading, most of the time IgA shows itself after > the flu or some sort of illness. My son has never even been on an antibiotic or > had an ear infection before. He's had the Chicken Pox 11 years ago and > that's it. Could the accident have caused Disease to show itself?? His urine has > always been normal looking, including the night of the accident, but 2 days > later it started getting darker and darker until now it looks like black coffee. > He has another follow up appointment in 1 month. The Nephrologist has not > went over any type of diet or restrictions. He did put him on Vasotec for blood > pressure although his blood pressure isn't high. I'm assuming this is a > preventative?? Also, in all the blood tests he's had, his cholesterol is always > high. Is this normal with the disease? Another thing that has me worried with > the blood tests is that his bilirubin levels are high. None of the doctors > have commented on that. When I asked his Neprologist this last week he said > he'd look into it and get back with me. I can't remember the exact numbers, but > if the normal range of bilirubin was like 0.2 through 0.8, my sons was like > 4.3 which is extremely high imo. Does that have something to do with IgA also? > > Sorry for all the questions, I just have no clue where to start right now and > am still somewhat in a state of shock. > > Thanks so much, > in IN > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2004 Report Share Posted February 14, 2004 what is bilirubin?????????,,,,,,,,,crystal All I know (at least I think) is that it has something to do with his liver. When my oldest son was a tiny baby, his bilirubin levels were high and they said he was jaundice. So I'm guessing it has something to do with that, but not sure. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2004 Report Share Posted February 14, 2004 what is bilirubin?????????,,,,,,,,,crystal All I know (at least I think) is that it has something to do with his liver. When my oldest son was a tiny baby, his bilirubin levels were high and they said he was jaundice. So I'm guessing it has something to do with that, but not sure. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2004 Report Share Posted February 14, 2004 what is bilirubin?????????,,,,,,,,,crystal All I know (at least I think) is that it has something to do with his liver. When my oldest son was a tiny baby, his bilirubin levels were high and they said he was jaundice. So I'm guessing it has something to do with that, but not sure. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2004 Report Share Posted February 14, 2004 , My son was also diagnosed at 13. According to the pediatric nephrologist who treated him, early adolescence is a fairly common time for IgAN to flare up, at least in boys. Obviously, it can show up earlier or later, but he suggested that perhaps at that age, it has something to do with increase in growth hormones, etc. I would suspect that it's just coincidental that your son was involved in the accident and bruised his kidney around the time the IgAN was beginning to show up. IgAN is a systemic disease which affects both kidneys, and the accident apparently only bruised one, and, as far as I know, bruising of the kidney would not cause IgA deposits to be there when he had the renal biopsy. When my son started showing symptoms (cola colored urine), we were first told by the pediatrician that it was probably post-strep glomerulonephritis. When I pointed out he had only had strep once when he was 5, we were told that there were " silent " cases of strep with no symptoms and not to worry because post-strep gn resolves on its own after a few weeks. Long story short - it turned out to be IgAN. The nephrologist suspected IgAN right away but didn't do a biopsy until he began to spill more protein in his urine. Initially he was put on lisinopril, an ACE inhibitor for blood pressure like Vasotec, even though like your son his bp was normal. It is preventative, and the ACE inhibitors are especially good for IgAN because they decrease pressure within the kidneys specifically. He also took Omega 3 fish oil capsules. I'm not certain what the 5 cells out of 15 being dead in the biopsy meant, but I'm guessing it refers to the number of glomeruli in the sample and that 5 out of 15 had scarring (crescents). That would suggest a fair amount of scarring but not extreme. The percentage of crescents in the biopsy sample is a pretty good indicator for how advanced the disease is. I would ask the nephrologist about this specifically. At biopsy, my son had about 30% crescenting, but serum creatinine and kidney function were both normal at that time. The amount of protein being spilled in the urine is a more significant indicator of the seriousness of the disease than the amount of blood in the urine. Of course, blood in the urine is dramatic, but many IgAN patients never or rarely have visible blood. My son did well until he was 18, and then kidney function began to decline and we did a transplant when he was 21. He's 24 now and doing fine. There are several subtypes of IgAN, some of which progress very slowly and may never reach kidney failure, some are rapid-progressing, and his type was sort of in the middle. I hope your son's is the slow kind and things stabilize soon for him. Let me know if you have other questions. Take care - Betsy > Hi! > I just joined this list. My 13 year old son was diagnosed 4 days ago. There > is so much to learn and I'm so confused about it all. > I do have a question or maybe just wanting your opinion...... > In Sept my son was on his moped and ran into a car that ran a stop sign. He > walked away from the accident with a couple minor bruises. We took him to the > ER to get checked out, just in case. The doctor took a urine sample and came > back in saying there were traces of blood in his urine so they did a CAT > scan. We were sent home and the Radiologist called the next day saying the > CAT > scan showed bruising to the kidney but no apparant rips or tears in the > kidney. > He went to the Family doctor weekly to have his urine checked. After 3 weeks > with no improvement, the Family doctor sent him to a Urologist. The > Urologist did a cystoscopy (sp???) and everything came out fine. After many > weeks of > blood work, urine tests and doctors visits they decided to send him to a > Nephrologist. The Nephrologist was stumped and ended up saying to give it a > month > to see if there was any improvements. We returned a month later, with no > improvements. His urine was getting darker and darker with lots of Protein. > The > Nephrologist finally ordered a kidney biopsy. We were told Tuesday that he > has IgA. It was a shock since we thought all along this was trauma to the > kidney from the accident. > He said 5 of the 15 cells in the biopsy were dead. What does that mean??? > Also, from what I've been reading, most of the time IgA shows itself after > the flu or some sort of illness. My son has never even been on an antibiotic > or > had an ear infection before. He's had the Chicken Pox 11 years ago and > that's it. Could the accident have caused Disease to show itself?? His urine > has > always been normal looking, including the night of the accident, but 2 days > later it started getting darker and darker until now it looks like black > coffee. > He has another follow up appointment in 1 month. The Nephrologist has not > went over any type of diet or restrictions. He did put him on Vasotec for > blood > pressure although his blood pressure isn't high. I'm assuming this is a > preventative?? Also, in all the blood tests he's had, his cholesterol is > always > high. Is this normal with the disease? Another thing that has me worried > with > the blood tests is that his bilirubin levels are high. None of the doctors > have commented on that. When I asked his Neprologist this last week he said > he'd look into it and get back with me. I can't remember the exact numbers, > but > if the normal range of bilirubin was like 0.2 through 0.8, my sons was like > 4.3 which is extremely high imo. Does that have something to do with IgA > also? > > Sorry for all the questions, I just have no clue where to start right now and > am still somewhat in a state of shock. > > Thanks so much, > in IN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2004 Report Share Posted February 14, 2004 , My son was also diagnosed at 13. According to the pediatric nephrologist who treated him, early adolescence is a fairly common time for IgAN to flare up, at least in boys. Obviously, it can show up earlier or later, but he suggested that perhaps at that age, it has something to do with increase in growth hormones, etc. I would suspect that it's just coincidental that your son was involved in the accident and bruised his kidney around the time the IgAN was beginning to show up. IgAN is a systemic disease which affects both kidneys, and the accident apparently only bruised one, and, as far as I know, bruising of the kidney would not cause IgA deposits to be there when he had the renal biopsy. When my son started showing symptoms (cola colored urine), we were first told by the pediatrician that it was probably post-strep glomerulonephritis. When I pointed out he had only had strep once when he was 5, we were told that there were " silent " cases of strep with no symptoms and not to worry because post-strep gn resolves on its own after a few weeks. Long story short - it turned out to be IgAN. The nephrologist suspected IgAN right away but didn't do a biopsy until he began to spill more protein in his urine. Initially he was put on lisinopril, an ACE inhibitor for blood pressure like Vasotec, even though like your son his bp was normal. It is preventative, and the ACE inhibitors are especially good for IgAN because they decrease pressure within the kidneys specifically. He also took Omega 3 fish oil capsules. I'm not certain what the 5 cells out of 15 being dead in the biopsy meant, but I'm guessing it refers to the number of glomeruli in the sample and that 5 out of 15 had scarring (crescents). That would suggest a fair amount of scarring but not extreme. The percentage of crescents in the biopsy sample is a pretty good indicator for how advanced the disease is. I would ask the nephrologist about this specifically. At biopsy, my son had about 30% crescenting, but serum creatinine and kidney function were both normal at that time. The amount of protein being spilled in the urine is a more significant indicator of the seriousness of the disease than the amount of blood in the urine. Of course, blood in the urine is dramatic, but many IgAN patients never or rarely have visible blood. My son did well until he was 18, and then kidney function began to decline and we did a transplant when he was 21. He's 24 now and doing fine. There are several subtypes of IgAN, some of which progress very slowly and may never reach kidney failure, some are rapid-progressing, and his type was sort of in the middle. I hope your son's is the slow kind and things stabilize soon for him. Let me know if you have other questions. Take care - Betsy > Hi! > I just joined this list. My 13 year old son was diagnosed 4 days ago. There > is so much to learn and I'm so confused about it all. > I do have a question or maybe just wanting your opinion...... > In Sept my son was on his moped and ran into a car that ran a stop sign. He > walked away from the accident with a couple minor bruises. We took him to the > ER to get checked out, just in case. The doctor took a urine sample and came > back in saying there were traces of blood in his urine so they did a CAT > scan. We were sent home and the Radiologist called the next day saying the > CAT > scan showed bruising to the kidney but no apparant rips or tears in the > kidney. > He went to the Family doctor weekly to have his urine checked. After 3 weeks > with no improvement, the Family doctor sent him to a Urologist. The > Urologist did a cystoscopy (sp???) and everything came out fine. After many > weeks of > blood work, urine tests and doctors visits they decided to send him to a > Nephrologist. The Nephrologist was stumped and ended up saying to give it a > month > to see if there was any improvements. We returned a month later, with no > improvements. His urine was getting darker and darker with lots of Protein. > The > Nephrologist finally ordered a kidney biopsy. We were told Tuesday that he > has IgA. It was a shock since we thought all along this was trauma to the > kidney from the accident. > He said 5 of the 15 cells in the biopsy were dead. What does that mean??? > Also, from what I've been reading, most of the time IgA shows itself after > the flu or some sort of illness. My son has never even been on an antibiotic > or > had an ear infection before. He's had the Chicken Pox 11 years ago and > that's it. Could the accident have caused Disease to show itself?? His urine > has > always been normal looking, including the night of the accident, but 2 days > later it started getting darker and darker until now it looks like black > coffee. > He has another follow up appointment in 1 month. The Nephrologist has not > went over any type of diet or restrictions. He did put him on Vasotec for > blood > pressure although his blood pressure isn't high. I'm assuming this is a > preventative?? Also, in all the blood tests he's had, his cholesterol is > always > high. Is this normal with the disease? Another thing that has me worried > with > the blood tests is that his bilirubin levels are high. None of the doctors > have commented on that. When I asked his Neprologist this last week he said > he'd look into it and get back with me. I can't remember the exact numbers, > but > if the normal range of bilirubin was like 0.2 through 0.8, my sons was like > 4.3 which is extremely high imo. Does that have something to do with IgA > also? > > Sorry for all the questions, I just have no clue where to start right now and > am still somewhat in a state of shock. > > Thanks so much, > in IN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2004 Report Share Posted February 14, 2004 , My son was also diagnosed at 13. According to the pediatric nephrologist who treated him, early adolescence is a fairly common time for IgAN to flare up, at least in boys. Obviously, it can show up earlier or later, but he suggested that perhaps at that age, it has something to do with increase in growth hormones, etc. I would suspect that it's just coincidental that your son was involved in the accident and bruised his kidney around the time the IgAN was beginning to show up. IgAN is a systemic disease which affects both kidneys, and the accident apparently only bruised one, and, as far as I know, bruising of the kidney would not cause IgA deposits to be there when he had the renal biopsy. When my son started showing symptoms (cola colored urine), we were first told by the pediatrician that it was probably post-strep glomerulonephritis. When I pointed out he had only had strep once when he was 5, we were told that there were " silent " cases of strep with no symptoms and not to worry because post-strep gn resolves on its own after a few weeks. Long story short - it turned out to be IgAN. The nephrologist suspected IgAN right away but didn't do a biopsy until he began to spill more protein in his urine. Initially he was put on lisinopril, an ACE inhibitor for blood pressure like Vasotec, even though like your son his bp was normal. It is preventative, and the ACE inhibitors are especially good for IgAN because they decrease pressure within the kidneys specifically. He also took Omega 3 fish oil capsules. I'm not certain what the 5 cells out of 15 being dead in the biopsy meant, but I'm guessing it refers to the number of glomeruli in the sample and that 5 out of 15 had scarring (crescents). That would suggest a fair amount of scarring but not extreme. The percentage of crescents in the biopsy sample is a pretty good indicator for how advanced the disease is. I would ask the nephrologist about this specifically. At biopsy, my son had about 30% crescenting, but serum creatinine and kidney function were both normal at that time. The amount of protein being spilled in the urine is a more significant indicator of the seriousness of the disease than the amount of blood in the urine. Of course, blood in the urine is dramatic, but many IgAN patients never or rarely have visible blood. My son did well until he was 18, and then kidney function began to decline and we did a transplant when he was 21. He's 24 now and doing fine. There are several subtypes of IgAN, some of which progress very slowly and may never reach kidney failure, some are rapid-progressing, and his type was sort of in the middle. I hope your son's is the slow kind and things stabilize soon for him. Let me know if you have other questions. Take care - Betsy > Hi! > I just joined this list. My 13 year old son was diagnosed 4 days ago. There > is so much to learn and I'm so confused about it all. > I do have a question or maybe just wanting your opinion...... > In Sept my son was on his moped and ran into a car that ran a stop sign. He > walked away from the accident with a couple minor bruises. We took him to the > ER to get checked out, just in case. The doctor took a urine sample and came > back in saying there were traces of blood in his urine so they did a CAT > scan. We were sent home and the Radiologist called the next day saying the > CAT > scan showed bruising to the kidney but no apparant rips or tears in the > kidney. > He went to the Family doctor weekly to have his urine checked. After 3 weeks > with no improvement, the Family doctor sent him to a Urologist. The > Urologist did a cystoscopy (sp???) and everything came out fine. After many > weeks of > blood work, urine tests and doctors visits they decided to send him to a > Nephrologist. The Nephrologist was stumped and ended up saying to give it a > month > to see if there was any improvements. We returned a month later, with no > improvements. His urine was getting darker and darker with lots of Protein. > The > Nephrologist finally ordered a kidney biopsy. We were told Tuesday that he > has IgA. It was a shock since we thought all along this was trauma to the > kidney from the accident. > He said 5 of the 15 cells in the biopsy were dead. What does that mean??? > Also, from what I've been reading, most of the time IgA shows itself after > the flu or some sort of illness. My son has never even been on an antibiotic > or > had an ear infection before. He's had the Chicken Pox 11 years ago and > that's it. Could the accident have caused Disease to show itself?? His urine > has > always been normal looking, including the night of the accident, but 2 days > later it started getting darker and darker until now it looks like black > coffee. > He has another follow up appointment in 1 month. The Nephrologist has not > went over any type of diet or restrictions. He did put him on Vasotec for > blood > pressure although his blood pressure isn't high. I'm assuming this is a > preventative?? Also, in all the blood tests he's had, his cholesterol is > always > high. Is this normal with the disease? Another thing that has me worried > with > the blood tests is that his bilirubin levels are high. None of the doctors > have commented on that. When I asked his Neprologist this last week he said > he'd look into it and get back with me. I can't remember the exact numbers, > but > if the normal range of bilirubin was like 0.2 through 0.8, my sons was like > 4.3 which is extremely high imo. Does that have something to do with IgA > also? > > Sorry for all the questions, I just have no clue where to start right now and > am still somewhat in a state of shock. > > Thanks so much, > in IN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2004 Report Share Posted February 15, 2004 Hi , A warm welcome to our group, but I am very sorry you have the occasion to be here. It always pains me when the young ones are diagnosed and I am so sorry he has joined the club of fellow IgANers. His IgAN may have had nothing to do with his accident. It is very common that a routine test for other reasons is what first flags blood and/or protein in urine. IgAN is a very silent disease until you get closer to end stage renal disease although fortunately only 30-50% ever do reach that point. It may be that it was just because he was tested that the abnormalities were detected. With IgAN, any type of stress on the body such as a viral illness, a bacterial illness, or an accident such as your son had can cause a flare up, and it may just be that the stress of the accident precipitated the symptoms to become so evident as he got visible blood in his urine. You are correct that more often the visible, or macroscopic, blood comes in conjunction with a viral illness, but a viral illness is not the exclusive cause of it. On the biopsy, it sounds like 1/3 of the glomeruli were sclerotic, or nonfunctioning. Did they mention any crescents? It is actually the crescents that are more indicative of a poor prognosis. Also, macroscopic blood is actually indicative of a better prognosis. It is those with microscopic blood that tend to have a poorer prognosis, but I do understand how frightening that dark urine can be. On dietary restrictions, it is imperative that they be customized according to individual lab results. Some of us are on restricted protein, potassium, sodium and/or phosphorus, but again, that is only a reflection of our lab tests. Please ask your Nephrologist if your son needs to be on a low protein diet, or if he recommends any other dietary restrictions. The Vasotec has a renal protective funtion, and therefore ACE inhibitors are fairly standard treatment for IgAN. As for Cholesterol, yes, many of us also tend to run with very high cholesterol. It will be important for you to keep an eye on his cholesterol levels. On the bilirubin being elevated, when IgAN flares up as your son's has, it can cause other liver and sometimes pancreas enzymes to be elevated too. I would not worry too much about that yet until after his flare up subsides. Do have it followed though to make sure they return to a normal baseline. Welcome again, and please do not hesitate to ask any questions you may have as you go along. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2004 Report Share Posted February 15, 2004 , Deep breath time.... you and your son will get through this one. I'm sorry about the moped accident... but glad your son was diagnosed before he presented in far worst shape than he is at present. It must have been difficult switching from thinking it was the accident to thinking about a chronic disease. Unfortunately, the high cholesterol goes with high proteinuria. I hope your docs have presented some ways for you to get that urine protein down. Some of the more common ways are ACE inhibitors and prednisone. Less common are various immunosuppressants such as cellcept and cyclosporin and other approaches such as cytoxan. Five out of 15 cells suggests that your son's renal function is rather impaired (many people on this board have far worse). What kind of creatinine numbers does he have? You are absolutely right when you say there is " so much to learn " . Unfortunately, kidney disease can be like learning a new language. Having done d medicald research and medical tech writing for a number of years, I thought was I was semi-on top of things - until my son was diagnosed and the deficits in my knowledge about matters renal became immediately apparent! If you have a chance, please let us know more about your son's labs. Someone here can help you make sense of them. Recently, I wrote a very long post about our " year post diagnosis " describing my 13 year old's experiences. I don't want to repeat again, but I will send to you under separate cover. Welcome to the group. I'm sorry you have reason to be here, but very glad you found your way here. Finding oneself to be the parent of a chronically ill kid is a very scary experience. I hope we can make it a bit less scary. Cy New Here > Hi! > I just joined this list. My 13 year old son was diagnosed 4 days ago. There > is so much to learn and I'm so confused about it all. > I do have a question or maybe just wanting your opinion...... > In Sept my son was on his moped and ran into a car that ran a stop sign. He > walked away from the accident with a couple minor bruises. We took him to the > ER to get checked out, just in case. The doctor took a urine sample and came > back in saying there were traces of blood in his urine so they did a CAT > scan. We were sent home and the Radiologist called the next day saying the CAT > scan showed bruising to the kidney but no apparant rips or tears in the kidney. > He went to the Family doctor weekly to have his urine checked. After 3 weeks > with no improvement, the Family doctor sent him to a Urologist. The > Urologist did a cystoscopy (sp???) and everything came out fine. After many weeks of > blood work, urine tests and doctors visits they decided to send him to a > Nephrologist. The Nephrologist was stumped and ended up saying to give it a month > to see if there was any improvements. We returned a month later, with no > improvements. His urine was getting darker and darker with lots of Protein. The > Nephrologist finally ordered a kidney biopsy. We were told Tuesday that he > has IgA. It was a shock since we thought all along this was trauma to the > kidney from the accident. > He said 5 of the 15 cells in the biopsy were dead. What does that mean??? > Also, from what I've been reading, most of the time IgA shows itself after > the flu or some sort of illness. My son has never even been on an antibiotic or > had an ear infection before. He's had the Chicken Pox 11 years ago and > that's it. Could the accident have caused Disease to show itself?? His urine has > always been normal looking, including the night of the accident, but 2 days > later it started getting darker and darker until now it looks like black coffee. > He has another follow up appointment in 1 month. The Nephrologist has not > went over any type of diet or restrictions. He did put him on Vasotec for blood > pressure although his blood pressure isn't high. I'm assuming this is a > preventative?? Also, in all the blood tests he's had, his cholesterol is always > high. Is this normal with the disease? Another thing that has me worried with > the blood tests is that his bilirubin levels are high. None of the doctors > have commented on that. When I asked his Neprologist this last week he said > he'd look into it and get back with me. I can't remember the exact numbers, but > if the normal range of bilirubin was like 0.2 through 0.8, my sons was like > 4.3 which is extremely high imo. Does that have something to do with IgA also? > > Sorry for all the questions, I just have no clue where to start right now and > am still somewhat in a state of shock. > > Thanks so much, > in IN > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2004 Report Share Posted February 16, 2004 : What kind of creatinine numbers does he have? I have no idea what his creatinine numbers are. They weren't discussed with us at the time of the diagnosis. He goes back in 3 weeks and I'll be sure to ask. Thanks for the welcome (to everyone) and for all the information everyone here has given me so far. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2004 Report Share Posted February 16, 2004 : What kind of creatinine numbers does he have? I have no idea what his creatinine numbers are. They weren't discussed with us at the time of the diagnosis. He goes back in 3 weeks and I'll be sure to ask. Thanks for the welcome (to everyone) and for all the information everyone here has given me so far. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2004 Report Share Posted March 5, 2004 Hi wendy, a belated welcome to the group! I'm sure everyone has taken good care of you - I just wanted to say hi! I'm a relative newcomer here too and was as confused as you - between the info I extracted from people here and my own research, I'm slowly building up a knowledge base of info and I am sure you will too! I think, once I got over the shock of a renal disease, it became a little easier for me but I still find I learn so much here and I hope you do too! Dave New Here Hi! I just joined this list. My 13 year old son was diagnosed 4 days ago. There is so much to learn and I'm so confused about it all. I do have a question or maybe just wanting your opinion...... In Sept my son was on his moped and ran into a car that ran a stop sign. He walked away from the accident with a couple minor bruises. We took him to the ER to get checked out, just in case. The doctor took a urine sample and came back in saying there were traces of blood in his urine so they did a CAT scan. We were sent home and the Radiologist called the next day saying the CAT scan showed bruising to the kidney but no apparant rips or tears in the kidney. He went to the Family doctor weekly to have his urine checked. After 3 weeks with no improvement, the Family doctor sent him to a Urologist. The Urologist did a cystoscopy (sp???) and everything came out fine. After many weeks of blood work, urine tests and doctors visits they decided to send him to a Nephrologist. The Nephrologist was stumped and ended up saying to give it a month to see if there was any improvements. We returned a month later, with no improvements. His urine was getting darker and darker with lots of Protein. The Nephrologist finally ordered a kidney biopsy. We were told Tuesday that he has IgA. It was a shock since we thought all along this was trauma to the kidney from the accident. He said 5 of the 15 cells in the biopsy were dead. What does that mean??? Also, from what I've been reading, most of the time IgA shows itself after the flu or some sort of illness. My son has never even been on an antibiotic or had an ear infection before. He's had the Chicken Pox 11 years ago and that's it. Could the accident have caused Disease to show itself?? His urine has always been normal looking, including the night of the accident, but 2 days later it started getting darker and darker until now it looks like black coffee. He has another follow up appointment in 1 month. The Nephrologist has not went over any type of diet or restrictions. He did put him on Vasotec for blood pressure although his blood pressure isn't high. I'm assuming this is a preventative?? Also, in all the blood tests he's had, his cholesterol is always high. Is this normal with the disease? Another thing that has me worried with the blood tests is that his bilirubin levels are high. None of the doctors have commented on that. When I asked his Neprologist this last week he said he'd look into it and get back with me. I can't remember the exact numbers, but if the normal range of bilirubin was like 0.2 through 0.8, my sons was like 4.3 which is extremely high imo. Does that have something to do with IgA also? Sorry for all the questions, I just have no clue where to start right now and am still somewhat in a state of shock. Thanks so much, in IN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2005 Report Share Posted June 9, 2005 When I make my bread, I slice it, then wrap it individually between wax paper and freeze it. I just cut off a long strip, fold it in half, and then fan fold it between slices. Then I can take out just one slice or two or 6, microwave them a brief amount of time wrapped in a paper towel and use it. It keeps longer that way and I'm not wasting it. I think the reason most of us cook is that the convience foods are just so darn expensive. We find some way to make it from scratch. I was on a local list for CD, but this one is much better. I'm with you, I love this list. Loriann aka Flitter the Christian clown and Celiac DiseaseWife to Dewight, USNavy RetiredMom to , 15, Down Syndrome, PDD-NOS and Celiac Diseaseand , 5 and ADHD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2005 Report Share Posted June 9, 2005 Coleen--Welcome! This is a great place! I was a person who never cooked before CD. Now I've got muffins made buy 6 am! A freezer is going to make your life grand. I've noticed smaller recipes yields in the book titled The Gluten Free Kitchen by Roben Ryberg. I don't have to cook for one but my mom does (though she is not cd) and she finds it a drag too. Mail order stuff will probably be your heaven. An effort in finding some close by celiacs might help too. I wish you lived near by--we'd bring you dinner anytime! Good luck, in MA --- Coleen wrote: > I have been lurking for a month now. Boy, have Y'all > taught me ALOT! OF > course I still have many questions but can't think > of any right now. I > do wonder where you get all that energy to cook all > that you do but of > course I think most are younger than I. > I had always just thought I had a spastic colon > problem until 2 yrs ago > I had breast cancer-double mastectomy, 5 weeks later > my youngest son was > killed in an accident, it was after these two > tragedy's I noticed my > stomach was doing alot of bloating, I just could not > eat very much or it > would feel like stomach was going to explode, I > started loosing weight, > Dr felt it was emotional, hysterectomy 6 months > later and the " clean > out " stuff for that surgery sent my stomach into > intense pain, at my > surgery followup the surgeon told me I needed to see > a digestive Dr, I > was to have a 5 week wait for an appt, got on > internet and did some > searching, Celiac disease looked to me like it fit, > no meds, just quit > eating gluten. On the 4th day of going gluten free > the intense pain went > away so I continuted eating that way, 6 weeks later > when I finally saw > the DR and he did tests of course I had been 6 weeks > gluten free so it > showed " no " . I had lost down to 100 pounds and was > just skin and bones > and soooo weak. Slowly I started gaining weight. > Then I got tired of > eating really plain and that's when I knew for sure > I had Celiac > disease. I also thought it was alot of whooy about > shampoos and lotions > and got it doing a number on me and have since fixed > that problem with > GF shampoos and GF lotions. > I have spent this last year buying new pots and > pans, new spices, you > know the routine.The nearest health food store > leaves alot to be desired > as I live in the middle of nowhere and going 70 > miles in high traffic is > impossible for me, besides I don't have the money, > am on SSD as I also > have chronic Lyme disease in which that is also a > problem trying to get > treated for that. > I wanted you ladies to know I admire your energy in > cooking and I have > learned so much from this list in the last month of > lurking. I have > decided I need a small freezer, I live alone but the > top of my refrig > just isn't big enough as I am getting tired of > cooking something and > then eating it for the next 3 days or until its > gone. > Thanks to this list I have found the best pasta, > will be making a > chocolate cake recipe that came thru here this week > as soon as I get a > freezer, I don't want to have to eat it for days and > days, I have > ordered some bread mixes and hope to find one that I > like, ah-the treat > of a sandwich. > IF there are any little secrets you think I should > know, I would love > hearing from you > Coleen-TX > __________________________________ Discover Yahoo! Have fun online with music videos, cool games, IM and more. Check it out! http://discover.yahoo.com/online.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2005 Report Share Posted June 11, 2005 Loriann, When I make my own bread, I generally use one of the mixes (like Bob's Red Mill) and they seem to be as expensive as the bought bread. Do you use a mix or do you have a recipe you like that's from scratch? I use a bread machine and would love to find a good recipe. Thanks, n, from Texas > I think the reason most of us cook is that the convience foods are just so darn expensive. We find some way to make it from scratch. > Loriann aka Flitter the Christian clown and Celiac Disease > Wife to Dewight, USNavy Retired > Mom to , 15, Down Syndrome, PDD-NOS and Celiac Disease > and , 5 and ADHD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2005 Report Share Posted June 11, 2005 I get my mix from Gluten free Pantry (http://www.glutenfree.com/online-store.htm - Favorite Sandwich bread), a big bag. It's a bit more than making it from scratch, but not quite as bad as paying $5 a loaf for an itty, bitty loaf. I've tried from scratch and just made too many mistakes. Loriann aka Flitter the Christian clown and Celiac DiseaseWife to Dewight, USNavy RetiredMom to , 15, Down Syndrome, PDD-NOS and Celiac Diseaseand , 5 and ADHD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2005 Report Share Posted June 12, 2005 If you like Bob's Red Mill mixes, go to his website to get some great recipes. Jen > Loriann, > > When I make my own bread, I generally use one of the mixes (like Bob's > Red Mill) and they seem to be as expensive as the bought bread. Do you > use a mix or do you have a recipe you like that's from scratch? I use a > bread machine and would love to find a good recipe. > > Thanks, > > n, from Texas > > > > I think the reason most of us cook is that the convience foods are > just so darn expensive. We find some way to make it from scratch. > > > Loriann aka Flitter the Christian clown and Celiac Disease > > Wife to Dewight, USNavy Retired > > Mom to , 15, Down Syndrome, PDD-NOS and Celiac Disease > > and , 5 and ADHD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2009 Report Share Posted October 25, 2009 Also, I'm not sure but it looked like the test were taken before any thyroid meds. had been taken for the results that showed this illness. Mine showed up after I had taken only Synthroid. And my FT4 was at the very top of the range my TSH was within range at the bottom and my FT3 was at the very bottom of the range. What it your thoughts on this?\ thanks Bev > > It means that your hypothyroidism is NOT due to poor thyroid function > but how your body uses the hormoens, in other word poor conversion and > receptor issues. Most doctors only think of hyothyroid ism as failure of > the thyroid and thta is certainly NOT the only cause of hypo. I suspect > I may have some genetic tendency to poor receptor activity or poor > converion due to the fact my Mom was a Hypo suicide. I certainyl had the > lwo T3 depression for many years as well and her father also was a > suicide though getting details abotu that has been dificult as no one in > my family will talk about it. He had two sisters with Diabetes and 2 > with Hashi's so I suspect that is the dise of the family my own thyroid > issues stemmed from. > > -- > Artistic Grooming- Hurricane WV > > http://www.stopthethyroidmadness.com/ > http://health.groups.yahoo.com/group/NaturalThyroidHormonesADRENALS/ > http://health.groups.yahoo.com/group/RT3_T3/ > http://groups.yahoo.com/group/HypoPets/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2009 Report Share Posted October 25, 2009 Also, I'm not sure but it looked like the test were taken before any thyroid meds. had been taken for the results that showed this illness. Mine showed up after I had taken only Synthroid. And my FT4 was at the very top of the range my TSH was within range at the bottom and my FT3 was at the very bottom of the range. What it your thoughts on this?\ thanks Bev > > It means that your hypothyroidism is NOT due to poor thyroid function > but how your body uses the hormoens, in other word poor conversion and > receptor issues. Most doctors only think of hyothyroid ism as failure of > the thyroid and thta is certainly NOT the only cause of hypo. I suspect > I may have some genetic tendency to poor receptor activity or poor > converion due to the fact my Mom was a Hypo suicide. I certainyl had the > lwo T3 depression for many years as well and her father also was a > suicide though getting details abotu that has been dificult as no one in > my family will talk about it. He had two sisters with Diabetes and 2 > with Hashi's so I suspect that is the dise of the family my own thyroid > issues stemmed from. > > -- > Artistic Grooming- Hurricane WV > > http://www.stopthethyroidmadness.com/ > http://health.groups.yahoo.com/group/NaturalThyroidHormonesADRENALS/ > http://health.groups.yahoo.com/group/RT3_T3/ > http://groups.yahoo.com/group/HypoPets/ > Quote Link to comment Share on other sites More sharing options...
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