Guest guest Posted December 13, 2004 Report Share Posted December 13, 2004 Hi Lori, A very warm welcome to the group. I am terribly sorry that your daughter has been diagnosed with IgAN. It is always hard when it is our children isn't it?? The good news is this, that only 30-50% of the total number of people with IGAN ever reach end stage where their kidneys fail, and that means 50-70% never do! Hopefully your daughter will fall into that category. Secondly, having the tea colored urine is actually a predictor of a better prognosis than those like me with microscopic blood. For some strange reason, those will visible blood do better in the long run than those without. A great place to start off is on our sister site www.igan.ca which our founder Pierre put up, and recently (like the last few days). That should give you a great starting place. Please feel free to ask any questions you may have too. Welcome again, In a message dated 12/13/2004 5:08:04 PM Pacific Standard Time, littlell523@... writes: > Hi everyone. Well lets see two weeks ago my 12 year old daughter > was diagnosed with iga-nephropathy. When she was admitted into the > hospital the protein in her urine was 1200, it also looked like tea > from the blood, her Cretian level was 1.5. They have her on 80 mg > of Predisone a day and a 2000mg low sodium diet a day, they also > have me taking her BP twice a day. I have been searching the web > for over a week for information on how to help her cope with the > changes in her life, but also so that I can try and understand the > changes and what is going on with her. Is she going to have Kidney > Failure, what are some of the things that I need to look for? I'm > so scared for her and I'm not sure what to expect. Can anyone help > me with this please. Thank you. > > Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2004 Report Share Posted December 13, 2004 Lori: Although my son, age 15, does not have IgA nephropathy, he has a similar disorder called Alport syndrome. He began having symptoms about 18 months ago, but was just officially diagnosed in August after a renal biopsy. I, too, was very scared and confused. In fact, for the first month after diagnosis I couldn't sleep at night, and when I did, would wake up in panic attacks. That has finally passed, thank God, with a lot of prayer and also due to my son's own very positive attitude. I am learning not to look at the long range outcome, but to just take one day and one thing at a time. This kind of thinking may be a kind of denial, but it is all I can deal with right now. We have our ups and downs, but as Rob puts it, we are not going to sit around and worry about his kidneys. We are marching on with life and he is taking his meds religiously, and taking care of himself. If you ever want to talk, feel free to email me privately. There are other moms on this site whose children do have IgA nephropathy, and they will also chime in and be ready to help you. This is a wonderful, caring list, which is why I have stuck around. Best wishes, , mom to Rob, 15 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2004 Report Share Posted December 13, 2004 Lori: Although my son, age 15, does not have IgA nephropathy, he has a similar disorder called Alport syndrome. He began having symptoms about 18 months ago, but was just officially diagnosed in August after a renal biopsy. I, too, was very scared and confused. In fact, for the first month after diagnosis I couldn't sleep at night, and when I did, would wake up in panic attacks. That has finally passed, thank God, with a lot of prayer and also due to my son's own very positive attitude. I am learning not to look at the long range outcome, but to just take one day and one thing at a time. This kind of thinking may be a kind of denial, but it is all I can deal with right now. We have our ups and downs, but as Rob puts it, we are not going to sit around and worry about his kidneys. We are marching on with life and he is taking his meds religiously, and taking care of himself. If you ever want to talk, feel free to email me privately. There are other moms on this site whose children do have IgA nephropathy, and they will also chime in and be ready to help you. This is a wonderful, caring list, which is why I have stuck around. Best wishes, , mom to Rob, 15 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2004 Report Share Posted December 13, 2004 Hi Lori! Well, you came to the right place! I am new to this group too and have discovered that there is a tremendous amount of support here. We have all been through this together and I hope you find that you and your family are not alone in this fight. I am truly sorry for the news you recently received. I was diagnosed at 17 years of age and must say it is not fun news at any age. The most important thing is to allow your precious daughter to feel as " normal " as possible through this. The thing my doctor told me at 17 was that I could live to be 100 and have no problems or I could experience kidney failure in 6 months. I ended up going 2 years with no problems. Then everything changed very quickly. Found myself in the ER and on dialysis over Labor Day weekend...was fortunate to receive a second life (transplant) from my loving father 3 months later. Today (12/14) is the 9 year anniversary of our surgeries. I know this is may all sound very scary. I do hope that you have a strong faith and family that will help you through this journey. Please do not hesitate to ask ANY questions...and again welcome! By the way, where in this great country are you and your daughter?? littlell523 wrote: Hi everyone. Well lets see two weeks ago my 12 year old daughter was diagnosed with iga-nephropathy. When she was admitted into the hospital the protein in her urine was 1200, it also looked like tea from the blood, her Cretian level was 1.5. They have her on 80 mg of Predisone a day and a 2000mg low sodium diet a day, they also have me taking her BP twice a day. I have been searching the web for over a week for information on how to help her cope with the changes in her life, but also so that I can try and understand the changes and what is going on with her. Is she going to have Kidney Failure, what are some of the things that I need to look for? I'm so scared for her and I'm not sure what to expect. Can anyone help me with this please. Thank you. Lori To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ To unsubcribe via email, iga-nephropathy-unsubscribe Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: http://www.igan.ca/id62.htm Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2004 Report Share Posted December 13, 2004 Lori, My son first showed symptoms of IgAN just before his 13th birthday. He had been very healthy and had no other significant health problems. I remember well how shocking it was to think of him as having a chronic illness. In reality the disease had very little impact on his life until kidney function began to decline about 5 years later. As already mentioned, the majority of those with IgAN do not progress to kidney failure, so let's hope your daughter is in that group. My son did progress to end-stage and got a transplant, but he is doing well now and living a very normal life. I believe there was someone else not too long ago in this group with a teenage daughter recently diagnosed who was looking for an internet " pen-pal " for her daughter. Maybe your daughter would like to swap emails with someone in a similar situation. good luck - Betsy > > > Hi everyone. Well lets see two weeks ago my 12 year old daughter > was diagnosed with iga-nephropathy. When she was admitted into the > hospital the protein in her urine was 1200, it also looked like tea > from the blood, her Cretian level was 1.5. They have her on 80 mg > of Predisone a day and a 2000mg low sodium diet a day, they also > have me taking her BP twice a day. I have been searching the web > for over a week for information on how to help her cope with the > changes in her life, but also so that I can try and understand the > changes and what is going on with her. Is she going to have Kidney > Failure, what are some of the things that I need to look for? I'm > so scared for her and I'm not sure what to expect. Can anyone help > me with this please. Thank you. > > Lori > > > > > > > > > To edit your settings for the group, go to our Yahoo Group > home page: > http://groups.yahoo.com/group/iga-nephropathy/ > > To unsubcribe via email, > iga-nephropathy-unsubscribe > Visit our companion website at www.igan.ca. The site is entirely > supported by donations. If you would like to help, go to: > http://www.igan.ca/id62.htm > > Thank you > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2004 Report Share Posted December 13, 2004 Lori, My son first showed symptoms of IgAN just before his 13th birthday. He had been very healthy and had no other significant health problems. I remember well how shocking it was to think of him as having a chronic illness. In reality the disease had very little impact on his life until kidney function began to decline about 5 years later. As already mentioned, the majority of those with IgAN do not progress to kidney failure, so let's hope your daughter is in that group. My son did progress to end-stage and got a transplant, but he is doing well now and living a very normal life. I believe there was someone else not too long ago in this group with a teenage daughter recently diagnosed who was looking for an internet " pen-pal " for her daughter. Maybe your daughter would like to swap emails with someone in a similar situation. good luck - Betsy > > > Hi everyone. Well lets see two weeks ago my 12 year old daughter > was diagnosed with iga-nephropathy. When she was admitted into the > hospital the protein in her urine was 1200, it also looked like tea > from the blood, her Cretian level was 1.5. They have her on 80 mg > of Predisone a day and a 2000mg low sodium diet a day, they also > have me taking her BP twice a day. I have been searching the web > for over a week for information on how to help her cope with the > changes in her life, but also so that I can try and understand the > changes and what is going on with her. Is she going to have Kidney > Failure, what are some of the things that I need to look for? I'm > so scared for her and I'm not sure what to expect. Can anyone help > me with this please. Thank you. > > Lori > > > > > > > > > To edit your settings for the group, go to our Yahoo Group > home page: > http://groups.yahoo.com/group/iga-nephropathy/ > > To unsubcribe via email, > iga-nephropathy-unsubscribe > Visit our companion website at www.igan.ca. The site is entirely > supported by donations. If you would like to help, go to: > http://www.igan.ca/id62.htm > > Thank you > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2004 Report Share Posted December 13, 2004 Lori, My son first showed symptoms of IgAN just before his 13th birthday. He had been very healthy and had no other significant health problems. I remember well how shocking it was to think of him as having a chronic illness. In reality the disease had very little impact on his life until kidney function began to decline about 5 years later. As already mentioned, the majority of those with IgAN do not progress to kidney failure, so let's hope your daughter is in that group. My son did progress to end-stage and got a transplant, but he is doing well now and living a very normal life. I believe there was someone else not too long ago in this group with a teenage daughter recently diagnosed who was looking for an internet " pen-pal " for her daughter. Maybe your daughter would like to swap emails with someone in a similar situation. good luck - Betsy > > > Hi everyone. Well lets see two weeks ago my 12 year old daughter > was diagnosed with iga-nephropathy. When she was admitted into the > hospital the protein in her urine was 1200, it also looked like tea > from the blood, her Cretian level was 1.5. They have her on 80 mg > of Predisone a day and a 2000mg low sodium diet a day, they also > have me taking her BP twice a day. I have been searching the web > for over a week for information on how to help her cope with the > changes in her life, but also so that I can try and understand the > changes and what is going on with her. Is she going to have Kidney > Failure, what are some of the things that I need to look for? I'm > so scared for her and I'm not sure what to expect. Can anyone help > me with this please. Thank you. > > Lori > > > > > > > > > To edit your settings for the group, go to our Yahoo Group > home page: > http://groups.yahoo.com/group/iga-nephropathy/ > > To unsubcribe via email, > iga-nephropathy-unsubscribe > Visit our companion website at www.igan.ca. The site is entirely > supported by donations. If you would like to help, go to: > http://www.igan.ca/id62.htm > > Thank you > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2004 Report Share Posted December 13, 2004 Lori, Welcome to the group, I'm glad you found us. I'm sorry to hear of your daughters diagnosis, it's always hard to hear about kids being diagnosed. already pointed you to our sister site which has a wealth of info on it. Keeping your daughters b/p under good control is one of the main things we can do to help prolong the life of our kidneys. High b/p in and of itself can damage the kidneys over time so keeping a close eye on it is a good thing. Once she is stabilized and the doctors are able to see her trends you should be able to reduce the number of times you have to take her b/p weekly. When I first started out I had to take mine 3x/day, now I do it a few times a week unless I find it running high. Prednisone is a rough drug to be on and there are quite a few of us here with experience on it. I've been on it for nearly 15 months now (don't let that scare you, most people are off it within 6-8 months). Please realize that all of the side effects of prednisone are temporary and the drug does do the trick for many when it comes to bringing down protein spills. It can and probably will bring on some changes in her body and face (she is at that age where those sort of things are going to matter A LOT) it causes your face to swell and your abdomen to swell just under the rib cage. Let her know this is temporary and WILL go away once off the drug. She may also have some emotional changes, prednisone can really play havoc with your mental state. Something you want to keep an eye on, though at 12 they tend to be an emotional roller coaster to begin with so it might be hard to see any drug induced changes. ) Some other problems she may encounter are: -- " fuzzy brain syndrome " (my name for it not a technical term) where she will have trouble doing new things or even recalling old things. Just try and help her with schoolwork at this time and make sure she isn't falling behind due to the effects of the drug. She may become frustrated easily and need a bit of hands on help with learning new things until on lower doses. --increased acne that won't clear up with any creams or cleansers --joint pain (bad charlie horse type pain) beyond the growing type joint pain she is probably already going thru. Drinking a lot of water in the evenings can help curb this problem if she finds it happening. It makes you have to get up to pee in the middle of the night but it's better than severe leg cramps, trust me on this. --she may bruise easier than normal while on prednisone --prednisone can also cause your b/p to rise and she will have to be monitored closely while on it. Her b/p med dose will probably change quite a few times while on the prednisone so they can keep her b/p within optimal range. This is a hassle but also perfectly normal. I tend to have my dose changed every one to two months to keep things in proper range. As her prednisone dose comes down they will make adjustments to her other meds as well. Kids tend to be pretty resilient in the face of IgAN and hopefully once they get her stable she will remain so for many years to come. You are in the right place to find answers and to find people to calm your fears. Please feel free to ask away with questions and we'll do our best to answer you. Welcome again, Amy G. Scared and Confused Hi everyone. Well lets see two weeks ago my 12 year old daughter was diagnosed with iga-nephropathy. When she was admitted into the hospital the protein in her urine was 1200, it also looked like tea from the blood, her Cretian level was 1.5. They have her on 80 mg of Predisone a day and a 2000mg low sodium diet a day, they also have me taking her BP twice a day. I have been searching the web for over a week for information on how to help her cope with the changes in her life, but also so that I can try and understand the changes and what is going on with her. Is she going to have Kidney Failure, what are some of the things that I need to look for? I'm so scared for her and I'm not sure what to expect. Can anyone help me with this please. Thank you. Lori To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ To unsubcribe via email, iga-nephropathy-unsubscribe Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: http://www.igan.ca/id62.htm Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 , That is just yet one more example of why Rob is so inspirational to all of us! I love him marching on with life. That is precisely what I try to do every single day; I count my blessings and march on! \ In a message dated 12/13/2004 10:04:31 PM Pacific Standard Time, snooksmama@... writes: > as Rob puts it, we are not going to sit around and worry about his kidneys. > We are marching on with life and he is taking his meds religiously, and > taking care of himself. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 Hi , To me, it's sounds like you've gone way past DENIAL and have rounded the corner into ACCEPTANCE. We can't choose the diseases we get, but we can choose how we deal with them. Rob sounds like he's a great kid. Pierre Re: Scared and Confused > > > Lori: > Although my son, age 15, does not have IgA nephropathy, he has a similar disorder called Alport syndrome. He began having symptoms about 18 months ago, but was just officially diagnosed in August after a renal biopsy. > I, too, was very scared and confused. In fact, for the first month after diagnosis I couldn't sleep at night, and when I did, would wake up in panic attacks. That has finally passed, thank God, with a lot of prayer and also due to my son's own very positive attitude. I am learning not to look at the long range outcome, but to just take one day and one thing at a time. This kind of thinking may be a kind of denial, but it is all I can deal with right now. We have our ups and downs, but as Rob puts it, we are not going to sit around and worry about his kidneys. We are marching on with life and he is taking his meds religiously, and taking care of himself. > If you ever want to talk, feel free to email me privately. > There are other moms on this site whose children do have IgA nephropathy, and they will also chime in and be ready to help you. This is a wonderful, caring list, which is why I have stuck around. > Best wishes, > , mom to Rob, 15 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 HI Lori It's probably way too early to tell if your daughter will eventually have kidney failure. Kids actually do pretty well with IgAN, for the most part, after the initial problems with protein and blood in the urine. Right now, the number sure don't indicate any kidney failure. They are probably just a touch elevated, temporarily. 2000mg sodium per day is about the same as the sodium restriction for dialysis patients and also pre-end-stage renal failure patient (the year or two pre-dialysis). It's not as low a number as it seems. A really low number would be 500mg, or maybe1000mg, but 2000mg is enough that you don't have to go nuts trying to avoid every bit of sodium in food. As long as she keeps away from high sodium foods (like chips, hotdogs, pizza, pickles and olives, etc.), it shouldn't be too hard to adapt. Avoiding pre-manufactured foods eliminates a lot of sodium right there, and then it's just a matter of being careful not to use too much in cooking or on the table. Don't hesitate to ask if you have any questions. Pierre Scared and Confused > > > > Hi everyone. Well lets see two weeks ago my 12 year old daughter > was diagnosed with iga-nephropathy. When she was admitted into the > hospital the protein in her urine was 1200, it also looked like tea > from the blood, her Cretian level was 1.5. They have her on 80 mg > of Predisone a day and a 2000mg low sodium diet a day, they also > have me taking her BP twice a day. I have been searching the web > for over a week for information on how to help her cope with the > changes in her life, but also so that I can try and understand the > changes and what is going on with her. Is she going to have Kidney > Failure, what are some of the things that I need to look for? I'm > so scared for her and I'm not sure what to expect. Can anyone help > me with this please. Thank you. > > Lori > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 HI Lori, That is great if her creatinine fell to 0.07! That is essentially normal function. I was praying it would go back after she recovered from her flare up. \In a message dated 12/14/2004 6:49:42 PM Pacific Standard Time, littlell523@... writes: > Thank you. It is so nice to know that I'm not alone. I would give > anything for it to be me and not my daughter. The doctor called > today, she had blood work on Friday and her Kidney function came > back at 0.07. I think this is pretty good, I'm really not sure. > When they released her from the hospital it was at 0.09. So it is > better than when we left the hospital. Thank you for the site I am > going to check it out in a couple of minutes. > > Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 Hi Lori, I know it is hard on your mother's heart, but baby-sitting her will only make her feel worse. I have had symptoms since I was a teenager myself, and the best thing my parents did was to not treat me any differently at all. If you act different, she will be more troubled too. I understand it is hard, but she needs to find her own strength and draw on that. The best thing you can do is to help her keep very positive and work on counting your blessings. I understand it is easier said than done, especially when you see cry over the things she can't eat, but it will really equip her to be able to be resilient and make her road easier. You can always come here and cry on our shoulders anytime though. We really do understand and will walk through this with you each step of the way. In a message dated 12/14/2004 6:51:29 PM Pacific Standard Time, littlell523@... writes: > I don't think I have slept in 3 weeks, I keep waking up at night and > checking on her. I'm really not sure how I'm going to deal with > that yet. I have also started babying her, I really don't want her > out of my sight, I know that this is nuts, but the thought that > keeps going through my head is " what if something happens and I'm > not there? " . 's attitude is positive also, she really doesn't > say to much. We were in the store today and she did start to cry, > because she can't eat the things that she has always eaten. I just > told her we would get through this and figure out something. I just > wanted to cry right with her. Thank you so much and I hope that I > don't drive everyone crazy with my questions. > > Lori H Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 Prednisone use is not normally long term unless it is post transplant. It is given usually for 6 months or a year (Amy has been on it longer) and slowly weaned. Amy's email yesterday about Prednisone had a great explanation of side effects. I will copy and paste it below for you. In a message dated 12/14/2004 6:51:19 PM Pacific Standard Time, littlell523@... writes: > One of the things that I > have been wondering is about the medication, what are the side > effects and what is the long term use of Presidone?? In a message dated 12/13/2004 10:39:54 PM Pacific Standard Time, purrfect@... writes: > Prednisone is a rough drug to be on and there are quite a few of us here > with experience on it. I've been on it for nearly 15 months now (don't let > that scare you, most people are off it within 6-8 months). Please realize that > all of the side effects of prednisone are temporary and the drug does do the > trick for many when it comes to bringing down protein spills. >  It can and probably will bring on some changes in her body and face (she > is at that age where those sort of things are going to matter A LOT) it causes > your face to swell and your abdomen to swell just under the rib cage. Let > her know this is temporary and WILL go away once off the drug. She may also > have some emotional changes, prednisone can really play havoc with your mental > state. Something you want to keep an eye on, though at 12 they tend to be > an emotional roller coaster to begin with so it might be hard to see any drug > induced changes. ) Some other problems she may encounter are: > -- " fuzzy brain syndrome " (my name for it not a technical term) where she > will have trouble doing new things or even recalling old things. Just try and > help her with schoolwork at this time and make sure she isn't falling behind > due to the effects of the drug. She may become frustrated easily and need a > bit of hands on help with learning new things until on lower doses. > --increased acne that won't clear up with any creams or cleansers > --joint pain (bad charlie horse type pain) beyond the growing type joint > pain she is probably already going thru. Drinking a lot of water in the > evenings can help curb this problem if she finds it happening. It makes you have to > get up to pee in the middle of the night but it's better than severe leg > cramps, trust me on this. > --she may bruise easier than normal while on prednisone > --prednisone can also cause your b/p to rise and she will have to be > monitored closely while on it. Her b/p med dose will probably change quite a few > times while on the prednisone so they can keep her b/p within optimal range. > This is a hassle but also perfectly normal. I tend to have my dose changed > every one to two months to keep things in proper range. As her prednisone dose > comes down they will make adjustments to her other meds as well. > > Kids tend to be pretty resilient in the face of IgAN and hopefully once they > get her stable she will remain so for many years to come. You are in the > right place to find answers and to find people to calm your fears. Please feel > free to ask away with questions and we'll do our best to answer you. > > Welcome again, > Amy G. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 - Congrats on the 2nd Anniversary of your " new life " - Hugs, Rita 12/14/1978 was my due date to deliver my beautiful son - He waited around until New Year's Day! Young wrote: Hi Lori! Well, you came to the right place! I am new to this group too and have discovered that there is a tremendous amount of support here. We have all been through this together and I hope you find that you and your family are not alone in this fight. I am truly sorry for the news you recently received. I was diagnosed at 17 years of age and must say it is not fun news at any age. The most important thing is to allow your precious daughter to feel as " normal " as possible through this. The thing my doctor told me at 17 was that I could live to be 100 and have no problems or I could experience kidney failure in 6 months. I ended up going 2 years with no problems. Then everything changed very quickly. Found myself in the ER and on dialysis over Labor Day weekend...was fortunate to receive a second life (transplant) from my loving father 3 months later. Today (12/14) is the 9 year anniversary of our surgeries. I know this is may all sound very scary. I do hope that you have a strong faith and family that will help you through this journey. Please do not hesitate to ask ANY questions...and again welcome! By the way, where in this great country are you and your daughter?? littlell523 wrote: Hi everyone. Well lets see two weeks ago my 12 year old daughter was diagnosed with iga-nephropathy. When she was admitted into the hospital the protein in her urine was 1200, it also looked like tea from the blood, her Cretian level was 1.5. They have her on 80 mg of Predisone a day and a 2000mg low sodium diet a day, they also have me taking her BP twice a day. I have been searching the web for over a week for information on how to help her cope with the changes in her life, but also so that I can try and understand the changes and what is going on with her. Is she going to have Kidney Failure, what are some of the things that I need to look for? I'm so scared for her and I'm not sure what to expect. Can anyone help me with this please. Thank you. Lori To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ To unsubcribe via email, iga-nephropathy-unsubscribe Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: http://www.igan.ca/id62.htm Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 Thank you. It is so nice to know that I'm not alone. I would give anything for it to be me and not my daughter. The doctor called today, she had blood work on Friday and her Kidney function came back at 0.07. I think this is pretty good, I'm really not sure. When they released her from the hospital it was at 0.09. So it is better than when we left the hospital. Thank you for the site I am going to check it out in a couple of minutes. Lori In iga-nephropathy , W4JC@a... wrote: > Hi Lori, > > A very warm welcome to the group. I am terribly sorry that your daughter has > been diagnosed with IgAN. It is always hard when it is our children isn't > it?? > > The good news is this, that only 30-50% of the total number of people with > IGAN ever reach end stage where their kidneys fail, and that means 50-70% never > do! Hopefully your daughter will fall into that category. Secondly, having > the tea colored urine is actually a predictor of a better prognosis than those > like me with microscopic blood. For some strange reason, those will visible > blood do better in the long run than those without. > > A great place to start off is on our sister site www.igan.ca which our > founder Pierre put up, and recently (like the last few days). That should give you > a great starting place. > > Please feel free to ask any questions you may have too. > > Welcome again, > > > > In a message dated 12/13/2004 5:08:04 PM Pacific Standard Time, > littlell523@y... writes: > > > Hi everyone. Well lets see two weeks ago my 12 year old daughter > > was diagnosed with iga-nephropathy. When she was admitted into the > > hospital the protein in her urine was 1200, it also looked like tea > > from the blood, her Cretian level was 1.5. They have her on 80 mg > > of Predisone a day and a 2000mg low sodium diet a day, they also > > have me taking her BP twice a day. I have been searching the web > > for over a week for information on how to help her cope with the > > changes in her life, but also so that I can try and understand the > > changes and what is going on with her. Is she going to have Kidney > > Failure, what are some of the things that I need to look for? I'm > > so scared for her and I'm not sure what to expect. Can anyone help > > me with this please. Thank you. > > > > Lori > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 Thank you and that would be wonderful for her to have a pen pal. The doctors told me after the biospy that the damage was severe. I don't know if that means she will have to have a transplant or what. I know that we are really sticking to her diet of 2000mg of sodium a day and taking the medication. One of the things that I have been wondering is about the medication, what are the side effects and what is the long term use of Presidone?? > > > > > > > Hi everyone. Well lets see two weeks ago my 12 year old daughter > > was diagnosed with iga-nephropathy. When she was admitted into the > > hospital the protein in her urine was 1200, it also looked like tea > > from the blood, her Cretian level was 1.5. They have her on 80 mg > > of Predisone a day and a 2000mg low sodium diet a day, they also > > have me taking her BP twice a day. I have been searching the web > > for over a week for information on how to help her cope with the > > changes in her life, but also so that I can try and understand the > > changes and what is going on with her. Is she going to have Kidney > > Failure, what are some of the things that I need to look for? I'm > > so scared for her and I'm not sure what to expect. Can anyone help > > me with this please. Thank you. > > > > Lori > > > > > > > > > > > > > > > > > > To edit your settings for the group, go to our Yahoo Group > > home page: > > http://groups.yahoo.com/group/iga-nephropathy/ > > > > To unsubcribe via email, > > iga-nephropathy-unsubscribe > > Visit our companion website at www.igan.ca. The site is entirely > > supported by donations. If you would like to help, go to: > > http://www.igan.ca/id62.htm > > > > Thank you > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 Her feeling normal was one of the things that my husband and I decided right away. We don't make special food just for her, if she can only have 2000mg of sodium, then so is everyone else. It is nice, to get so much support. For the last couple of weeks I have felt so lost and not sure what to do. By the way, we live in Michigan. Thank you again. Lori > > > Hi everyone. Well lets see two weeks ago my 12 year old daughter > was diagnosed with iga-nephropathy. When she was admitted into the > hospital the protein in her urine was 1200, it also looked like tea > from the blood, her Cretian level was 1.5. They have her on 80 mg > of Predisone a day and a 2000mg low sodium diet a day, they also > have me taking her BP twice a day. I have been searching the web > for over a week for information on how to help her cope with the > changes in her life, but also so that I can try and understand the > changes and what is going on with her. Is she going to have Kidney > Failure, what are some of the things that I need to look for? I'm > so scared for her and I'm not sure what to expect. Can anyone help > me with this please. Thank you. > > Lori > > > > > > > > > To edit your settings for the group, go to our Yahoo Group > home page: > http://groups.yahoo.com/group/iga-nephropathy/ > > To unsubcribe via email, > iga-nephropathy-unsubscribe > Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: > http://www.igan.ca/id62.htm > > Thank you > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 I don't think I have slept in 3 weeks, I keep waking up at night and checking on her. I'm really not sure how I'm going to deal with that yet. I have also started babying her, I really don't want her out of my sight, I know that this is nuts, but the thought that keeps going through my head is " what if something happens and I'm not there? " . 's attitude is positive also, she really doesn't say to much. We were in the store today and she did start to cry, because she can't eat the things that she has always eaten. I just told her we would get through this and figure out something. I just wanted to cry right with her. Thank you so much and I hope that I don't drive everyone crazy with my questions. Lori > > Lori: > Although my son, age 15, does not have IgA nephropathy, he has a similar disorder called Alport syndrome. He began having symptoms about 18 months ago, but was just officially diagnosed in August after a renal biopsy. > I, too, was very scared and confused. In fact, for the first month after diagnosis I couldn't sleep at night, and when I did, would wake up in panic attacks. That has finally passed, thank God, with a lot of prayer and also due to my son's own very positive attitude. I am learning not to look at the long range outcome, but to just take one day and one thing at a time. This kind of thinking may be a kind of denial, but it is all I can deal with right now. We have our ups and downs, but as Rob puts it, we are not going to sit around and worry about his kidneys. We are marching on with life and he is taking his meds religiously, and taking care of himself. > If you ever want to talk, feel free to email me privately. > There are other moms on this site whose children do have IgA nephropathy, and they will also chime in and be ready to help you. This is a wonderful, caring list, which is why I have stuck around. > Best wishes, > , mom to Rob, 15 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 , My son was 21 at the time of the transplant, and he went back to school right after to finish his last year of college. He is now almost 25 (next month) and is a software engineer for a government contractor. He did have a recurrence of the IgAN in the new kidney about 1.5 years after the transplant, which was treated successfully with Cytoxan and things are stable now 3+ years after the transplant. He has not been involved in a support group and thinks it's rather silly that I am still active with this group, but as I point out to him, he still has IgAN, new kidney or not. Actually I forward pertinent items to him and he does read them. He's enjoying a good income and a steady girlfriend, who has stood loyally by his side through transplant and recurrence, and is doing well on his current mix of meds, so he feels life is very good. He also has a transplant nephrologist who is terrific and has been very supportive and accessible by phone or email, so things do seem under control, at least for now. thanks for your concern - Betsy > > > Betsy-Hello! I just read your post and wanted to respond. How is your > son doing? How long has he had his transplant? Has he hooked up with > any support groups? I am discovering that more now, 9 years later, I > am seeking support. At the time of the transplant, I was 19, and > simply wanted to get back to normalcy, which did NOT include sitting > around talking about my problems. I am older and wiser now and am > realizing the value in support when it comes to life changing > situations like transplants. Is your son in college, working?? > > Have a wonderful day! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 I was wondering about all that, the doctors never did tell me how long they thought she was going to be on it. So, I don't understand, they put you on the prednisone to get the swelling down and stop the protien drops and then take you off it? I have also been reading about flare ups. If I'm understanding right, IGAN isn't something that is always there? The protien and blood will stop, and then what??? I understand that the damage that has been done can't be repaired, but I guess I don't get how this works?.? > Prednisone use is not normally long term unless it is post transplant. It is > given usually for 6 months or a year (Amy has been on it longer) and slowly > weaned. > > Amy's email yesterday about Prednisone had a great explanation of side > effects. I will copy and paste it below for you. > > > In a message dated 12/14/2004 6:51:19 PM Pacific Standard Time, > littlell523@y... writes: > > > One of the things that I > > have been wondering is about the medication, what are the side > > effects and what is the long term use of Presidone?? > > In a message dated 12/13/2004 10:39:54 PM Pacific Standard Time, > purrfect@e... writes: > > > Prednisone is a rough drug to be on and there are quite a few of us here > > with experience on it. I've been on it for nearly 15 months now (don't let > > that scare you, most people are off it within 6-8 months). Please realize that > > all of the side effects of prednisone are temporary and the drug does do the > > trick for many when it comes to bringing down protein spills. > > Â It can and probably will bring on some changes in her body and face (she > > is at that age where those sort of things are going to matter A LOT) it causes > > your face to swell and your abdomen to swell just under the rib cage. Let > > her know this is temporary and WILL go away once off the drug. She may also > > have some emotional changes, prednisone can really play havoc with your mental > > state. Something you want to keep an eye on, though at 12 they tend to be > > an emotional roller coaster to begin with so it might be hard to see any drug > > induced changes. ) Some other problems she may encounter are: > > -- " fuzzy brain syndrome " (my name for it not a technical term) where she > > will have trouble doing new things or even recalling old things. Just try and > > help her with schoolwork at this time and make sure she isn't falling behind > > due to the effects of the drug. She may become frustrated easily and need a > > bit of hands on help with learning new things until on lower doses. > > --increased acne that won't clear up with any creams or cleansers > > --joint pain (bad charlie horse type pain) beyond the growing type joint > > pain she is probably already going thru. Drinking a lot of water in the > > evenings can help curb this problem if she finds it happening. It makes you have to > > get up to pee in the middle of the night but it's better than severe leg > > cramps, trust me on this. > > --she may bruise easier than normal while on prednisone > > --prednisone can also cause your b/p to rise and she will have to be > > monitored closely while on it. Her b/p med dose will probably change quite a few > > times while on the prednisone so they can keep her b/p within optimal range. > > This is a hassle but also perfectly normal. I tend to have my dose changed > > every one to two months to keep things in proper range. As her prednisone dose > > comes down they will make adjustments to her other meds as well. > > > > Kids tend to be pretty resilient in the face of IgAN and hopefully once they > > get her stable she will remain so for many years to come. You are in the > > right place to find answers and to find people to calm your fears. Please feel > > free to ask away with questions and we'll do our best to answer you. > > > > Welcome again, > > Amy G. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 The Prednisone treatment is really based on patient response. They will monitor her labs to watch her protein spill, and when it is sufficiently down and she appears stable, they will slowly wean her off. A word of caution, being slowly weaned of is very important. Prednisone is one drug that it is very dangerous to just stop cold turkey. The flare-ups that occur with IgAN are in conjunction with a viral illness, and normally the labs will worsen during a flare up, and return to the baseline after recovery. But, unfortunately that does not mean the IgAN goes away. It never does go away. Many people have a fairly benign IgAN that never progresses to end stage, but the underlying disease does not go away. Occasionally, usually only in children, IgAN can go into remission though, but that is very rare. Hope this helps, In a message dated 12/15/2004 5:42:33 AM Pacific Standard Time, littlell523@... writes: > I was wondering about all that, the doctors never did tell me how > long they thought she was going to be on it. So, I don't > understand, they put you on the prednisone to get the swelling down > and stop the protien drops and then take you off it? I have also > been reading about flare ups. If I'm understanding right, IGAN > isn't something that is always there? The protien and blood will > stop, and then what??? I understand that the damage that has been > done can't be repaired, but I guess I don't get how this works?.? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Maybe in children, the IgAN is not always there (this is not really known). In people whose IgAN is secondary to HSP, the process which causes IgAN may not always be active. However, as fas as is known, IgAN is a chronic disease. The process that causes it is always going on in the kidneys to some extent, even when there are no visible " flare-ups " with dark-coloured urine. Otherwise, there would be no way to explain how people who never get these " flare-ups " (of which there are many, with biopsy-proven IgAN) see their serum gradually increase over the years and then they end up on dialysis. What happens is that there is always depositing of IgA antibody complexes in the mesangial part of the glomeruli, and this is what slowly but gradually destroys the filtering capacity of the kidneys. Pierre Re: Scared and Confused I was wondering about all that, the doctors never did tell me how long they thought she was going to be on it. So, I don't understand, they put you on the prednisone to get the swelling down and stop the protien drops and then take you off it? I have also been reading about flare ups. If I'm understanding right, IGAN isn't something that is always there? The protien and blood will stop, and then what??? I understand that the damage that has been done can't be repaired, but I guess I don't get how this works?.? > Prednisone use is not normally long term unless it is post transplant. It is > given usually for 6 months or a year (Amy has been on it longer) and slowly > weaned. > > Amy's email yesterday about Prednisone had a great explanation of side > effects. I will copy and paste it below for you. > > > In a message dated 12/14/2004 6:51:19 PM Pacific Standard Time, > littlell523@y... writes: > > > One of the things that I > > have been wondering is about the medication, what are the side > > effects and what is the long term use of Presidone?? > > In a message dated 12/13/2004 10:39:54 PM Pacific Standard Time, > purrfect@e... writes: > > > Prednisone is a rough drug to be on and there are quite a few of us here > > with experience on it. I've been on it for nearly 15 months now (don't let > > that scare you, most people are off it within 6-8 months). Please realize that > > all of the side effects of prednisone are temporary and the drug does do the > > trick for many when it comes to bringing down protein spills. > > It can and probably will bring on some changes in her body and face (she > > is at that age where those sort of things are going to matter A LOT) it causes > > your face to swell and your abdomen to swell just under the rib cage. Let > > her know this is temporary and WILL go away once off the drug. She may also > > have some emotional changes, prednisone can really play havoc with your mental > > state. Something you want to keep an eye on, though at 12 they tend to be > > an emotional roller coaster to begin with so it might be hard to see any drug > > induced changes. ) Some other problems she may encounter are: > > -- " fuzzy brain syndrome " (my name for it not a technical term) where she > > will have trouble doing new things or even recalling old things. Just try and > > help her with schoolwork at this time and make sure she isn't falling behind > > due to the effects of the drug. She may become frustrated easily and need a > > bit of hands on help with learning new things until on lower doses. > > --increased acne that won't clear up with any creams or cleansers > > --joint pain (bad charlie horse type pain) beyond the growing type joint > > pain she is probably already going thru. Drinking a lot of water in the > > evenings can help curb this problem if she finds it happening. It makes you have to > > get up to pee in the middle of the night but it's better than severe leg > > cramps, trust me on this. > > --she may bruise easier than normal while on prednisone > > --prednisone can also cause your b/p to rise and she will have to be > > monitored closely while on it. Her b/p med dose will probably change quite a few > > times while on the prednisone so they can keep her b/p within optimal range. > > This is a hassle but also perfectly normal. I tend to have my dose changed > > every one to two months to keep things in proper range. As her prednisone dose > > comes down they will make adjustments to her other meds as well. > > > > Kids tend to be pretty resilient in the face of IgAN and hopefully once they > > get her stable she will remain so for many years to come. You are in the > > right place to find answers and to find people to calm your fears. Please feel > > free to ask away with questions and we'll do our best to answer you. > > > > Welcome again, > > Amy G. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Lori- I am new to this group, but am already discovering the wealth of information that they have to share. It's reassuring to hear about the effects of medications and the experiences of the disease from people who live with it, rather than websites describing it. I'm sorry that this happened to your daughter, especially at such a young age. I was diagnosed at 22, while I lived in Michigan, actually, and found that the most helpful thing for me was to learn all I could about the disease-I've always been science-minded, and I was taking pathology and immunology courses at the time. Somehow, learning about it from that viewpoint really helped me come to grips with my situation. From having to deal with doctors and live with the reality of a chronic disease, I actually changed my career path-I have a degree in public health, but I'm looking to move into nursing. So you never know...good things can come out of unfortunate experiences. But it's important, since your daughter is still young, that you learn all you can in order to be an advocate for her health. > > > Hi everyone. Well lets see two weeks ago my 12 year old daughter > was diagnosed with iga-nephropathy. When she was admitted into the > hospital the protein in her urine was 1200, it also looked like tea > from the blood, her Cretian level was 1.5. They have her on 80 mg > of Predisone a day and a 2000mg low sodium diet a day, they also > have me taking her BP twice a day. I have been searching the web > for over a week for information on how to help her cope with the > changes in her life, but also so that I can try and understand the > changes and what is going on with her. Is she going to have Kidney > Failure, what are some of the things that I need to look for? I'm > so scared for her and I'm not sure what to expect. Can anyone help > me with this please. Thank you. > > Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Hi Lori, I'm sorry I didn't get a chance to welcome you earlier, but after reading your post, I wanted to take some time in responding. My now 14 year old son was diagnosed with MPGN when he was 11. Although more aggressive than IgAN, MPGN is very similar to IgAN - which is why we hang out here. When was first diagnosed, the bottom of my world fell out. I had the great fortune of getting laid off during the tech bust, which gave me a year to search the net, stay glued to several kidney boards and generally try to get some sense of the ground under our feet. This was a hard year, because there were also other issues that year unrelated to kidney disease (just started middle school the week after diagnosis, physically abusive teacher etc.) Unlike IgAN, MPGN is very rare and poorly researched. I rather see having rare diseases as a variant of the old Chinese curse about living in interesting times. The lack of information made things all the more terrifying. It took me a year to reach some sense of equanimity with it all. Learning about renal disease and coming to grips with this disease does not happen over night - however, both are important - for your daughter's sake. Quick word of advice about letting your world view regarding disease be shaped by the net - there's tons of great information out there about IgAN. Kidney boards and email lists are a great source of info --- however, they tend to be rather one-sided. Very few people write in to say they're doing fine - and it's very easy to believe that the complaints are universal. When started prednisone, I was terrified. However, the side effects were close to non-existent. More importantly, it turned out to be our wonder drug. It's an enormous relief to have a drug that responds to (many MPGN kids are steroid resistent). Try not to let your experiences and fears be colored too much by everyone else. If you get trapped by your fears, it makes it harder for your daughters. Kids are pretty resilient, if you let them be. At this point in your daughter's life, I bet she has a 1001 things that compete for her time and attention. The more you keep the focus there (and away from your own terrors), the more of a chance she will have to build the emotional and intellectual strengths she may need if difficult times follow. One thing (and I) found helpful was finding an excellent counselor. still refuses to talk about kidney disease with his friends. Actually, only one of his friends (a kid with cystic fibrosis) even knows he's sick, he's that closed mouth about it. Having an adult who is not your mother to talk to has helped immeasurably. The other good thing is there aren't too many curve balls with this disease. Generally, renal failure occurs slowly - and is very managable. At this point, I can say that not that much has changed in our lives. Do we worry about renal failure now? You bet. Am I more worried about how will do in the finals in the National Geographic geography bee this afternoon? You bet. Life goes on. As impossible as it seems now, trust me that your hopes and plans for your daughter have not been irrevocably changed. Cy Scared and Confused > > > > Hi everyone. Well lets see two weeks ago my 12 year old daughter > was diagnosed with iga-nephropathy. When she was admitted into the > hospital the protein in her urine was 1200, it also looked like tea > from the blood, her Cretian level was 1.5. They have her on 80 mg > of Predisone a day and a 2000mg low sodium diet a day, they also > have me taking her BP twice a day. I have been searching the web > for over a week for information on how to help her cope with the > changes in her life, but also so that I can try and understand the > changes and what is going on with her. Is she going to have Kidney > Failure, what are some of the things that I need to look for? I'm > so scared for her and I'm not sure what to expect. Can anyone help > me with this please. Thank you. > > Lori > > > > > > > > > > To edit your settings for the group, go to our Yahoo Group > home page: > http://groups.yahoo.com/group/iga-nephropathy/ > > To unsubcribe via email, > iga-nephropathy-unsubscribe > Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: > http://www.igan.ca/id62.htm > > Thank you > Quote Link to comment Share on other sites More sharing options...
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