Guest guest Posted December 28, 2004 Report Share Posted December 28, 2004 : That is some sound advice from Lori, who was in the same boat only a few weeks ago. Try not to over stress even if it seems so overwhelming right now - it's not good for your child and it's not good for you. You are not alone, and if it helps you and any other parent out there feel any better, I'm 38 and MY mom stills wants my results immediately whenever I go to the neph or lab. Personally, I call my wife first, since happy wife = happy life. You should also check out our companion site at www.igan.ca. There is a lot of information there that can really help you to sort out what is happening and prepare you for your visits to the neph. The more you know and understand, the better you are as your child's medical advocate, and that's the most important role you can play now. littlell523 wrote: I have a 12 year old that was just diagnosed about 4 weeks ago, how I cope is trying not to stress, which is really hard sometimes, the biggest thing is not to try and figure out what is/could happen in the next week, but get through each day as it comes. Don't get me wrong, I still have a hard time trying to do this all the time, but when I do it makes things easier on me and my daughter, the other way to cope is checking this group each day and posting questions and reading what others are saying. This is a great group of people and they are more than willing to help and support you, some of the people on this group have been dealing with this for quite sometime. How old is your child and when did you find out that he/she had IGAN? What treatment is being done? Lori > > Hello, I am new to this website. I was wondering anyone with a > child with iga and how are you coping with this illness. Please > reply thanks. 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 29, 2004 Report Share Posted December 29, 2004 happy wife = happy life - that's it - I'm sending you my husbands email address - you just have to pump that quote in his head - LOL Many hugs, Rita Cohen wrote: : That is some sound advice from Lori, who was in the same boat only a few weeks ago. Try not to over stress even if it seems so overwhelming right now - it's not good for your child and it's not good for you. You are not alone, and if it helps you and any other parent out there feel any better, I'm 38 and MY mom stills wants my results immediately whenever I go to the neph or lab. Personally, I call my wife first, since happy wife = happy life. You should also check out our companion site at www.igan.ca. There is a lot of information there that can really help you to sort out what is happening and prepare you for your visits to the neph. The more you know and understand, the better you are as your child's medical advocate, and that's the most important role you can play now. littlell523 wrote: I have a 12 year old that was just diagnosed about 4 weeks ago, how I cope is trying not to stress, which is really hard sometimes, the biggest thing is not to try and figure out what is/could happen in the next week, but get through each day as it comes. Don't get me wrong, I still have a hard time trying to do this all the time, but when I do it makes things easier on me and my daughter, the other way to cope is checking this group each day and posting questions and reading what others are saying. This is a great group of people and they are more than willing to help and support you, some of the people on this group have been dealing with this for quite sometime. How old is your child and when did you find out that he/she had IGAN? What treatment is being done? Lori > > Hello, I am new to this website. I was wondering anyone with a > child with iga and how are you coping with this illness. Please > reply thanks. 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 29, 2004 Report Share Posted December 29, 2004 Rita: Sorry to hear about the Zeester, but as you said, he is at peace. And I cannot take credit for the quote - it's my wife's. I think she may have even slipped them into our wedding vows ;-). Rita Nucciarone wrote: happy wife = happy life - that's it - I'm sending you my husbands email address - you just have to pump that quote in his head - LOL Many hugs, Rita Cohen wrote: : That is some sound advice from Lori, who was in the same boat only a few weeks ago. Try not to over stress even if it seems so overwhelming right now - it's not good for your child and it's not good for you. You are not alone, and if it helps you and any other parent out there feel any better, I'm 38 and MY mom stills wants my results immediately whenever I go to the neph or lab. Personally, I call my wife first, since happy wife = happy life. You should also check out our companion site at www.igan.ca. There is a lot of information there that can really help you to sort out what is happening and prepare you for your visits to the neph. The more you know and understand, the better you are as your child's medical advocate, and that's the most important role you can play now. littlell523 wrote: I have a 12 year old that was just diagnosed about 4 weeks ago, how I cope is trying not to stress, which is really hard sometimes, the biggest thing is not to try and figure out what is/could happen in the next week, but get through each day as it comes. Don't get me wrong, I still have a hard time trying to do this all the time, but when I do it makes things easier on me and my daughter, the other way to cope is checking this group each day and posting questions and reading what others are saying. This is a great group of people and they are more than willing to help and support you, some of the people on this group have been dealing with this for quite sometime. How old is your child and when did you find out that he/she had IGAN? What treatment is being done? Lori > > Hello, I am new to this website. I was wondering anyone with a > child with iga and how are you coping with this illness. Please > reply thanks. 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 29, 2004 Report Share Posted December 29, 2004 Rita Nucciarone wrote: happy wife = happy life - that's it - I'm sending you my husbands email address - you just have to pump that quote in his head - LOL Many hugs, Rita Cohen wrote: : That is some sound advice from Lori, who was in the same boat only a few weeks ago. Try not to over stress even if it seems so overwhelming right now - it's not good for your child and it's not good for you. You are not alone, and if it helps you and any other parent out there feel any better, I'm 38 and MY mom stills wants my results immediately whenever I go to the neph or lab. Personally, I call my wife first, since happy wife = happy life. You should also check out our companion site at www.igan.ca. There is a lot of information there that can really help you to sort out what is happening and prepare you for your visits to the neph. The more you know and understand, the better you are as your child's medical advocate, and that's the most important role you can play now. littlell523 wrote: I have a 12 year old that was just diagnosed about 4 weeks ago, how I cope is trying not to stress, which is really hard sometimes, the biggest thing is not to try and figure out what is/could happen in the next week, but get through each day as it comes. Don't get me wrong, I still have a hard time trying to do this all the time, but when I do it makes things easier on me and my daughter, the other way to cope is checking this group each day and posting questions and reading what others are saying. This is a great group of people and they are more than willing to help and support you, some of the people on this group have been dealing with this for quite sometime. How old is your child and when did you find out that he/she had IGAN? What treatment is being done? Lori > > Hello, I am new to this website. I was wondering anyone with a > child with iga and how are you coping with this illness. Please > reply thanks. 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 January 4, 2005 Report Share Posted January 4, 2005 Hi . My n ame is Tara and I also have a daughter who was diagnosed with IGaN in March of 2004. Sorry it's taken me so long to respond. My daugher's initial flare up was pretty bad. She's been on prednisone since last March and is being tapered down very gradually. Not to scare you because I don't know the specifics of your child's case, but we have experienced quite a bit since the first representation of the disease. Much like your child, my daughter is my strength many days. She's such a trooper to be only 9. She's my hero everyday. Be strong and my motto is to take one day at a time and don't stress until the nephs tell you to. Be strong and look to the many wonderful people here who know exactly what you're dealing with and have a lot of helpful advice. Tara, mother of Allie Beth Re: Re: igan Rita Nucciarone wrote: happy wife = happy life - that's it - I'm sending you my husbands email address - you just have to pump that quote in his head - LOL Many hugs, Rita Cohen wrote: : That is some sound advice from Lori, who was in the same boat only a few weeks ago. Try not to over stress even if it seems so overwhelming right now - it's not good for your child and it's not good for you. You are not alone, and if it helps you and any other parent out there feel any better, I'm 38 and MY mom stills wants my results immediately whenever I go to the neph or lab. Personally, I call my wife first, since happy wife = happy life. You should also check out our companion site at www.igan.ca. There is a lot of information there that can really help you to sort out what is happening and prepare you for your visits to the neph. The more you know and understand, the better you are as your child's medical advocate, and that's the most important role you can play now. littlell523 wrote: I have a 12 year old that was just diagnosed about 4 weeks ago, how I cope is trying not to stress, which is really hard sometimes, the biggest thing is not to try and figure out what is/could happen in the next week, but get through each day as it comes. Don't get me wrong, I still have a hard time trying to do this all the time, but when I do it makes things easier on me and my daughter, the other way to cope is checking this group each day and posting questions and reading what others are saying. This is a great group of people and they are more than willing to help and support you, some of the people on this group have been dealing with this for quite sometime. How old is your child and when did you find out that he/she had IGAN? What treatment is being done? Lori > > Hello, I am new to this website. I was wondering anyone with a > child with iga and how are you coping with this illness. Please > reply thanks. 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 January 4, 2005 Report Share Posted January 4, 2005 Hi . My n ame is Tara and I also have a daughter who was diagnosed with IGaN in March of 2004. Sorry it's taken me so long to respond. My daugher's initial flare up was pretty bad. She's been on prednisone since last March and is being tapered down very gradually. Not to scare you because I don't know the specifics of your child's case, but we have experienced quite a bit since the first representation of the disease. Much like your child, my daughter is my strength many days. She's such a trooper to be only 9. She's my hero everyday. Be strong and my motto is to take one day at a time and don't stress until the nephs tell you to. Be strong and look to the many wonderful people here who know exactly what you're dealing with and have a lot of helpful advice. Tara, mother of Allie Beth Re: Re: igan Rita Nucciarone wrote: happy wife = happy life - that's it - I'm sending you my husbands email address - you just have to pump that quote in his head - LOL Many hugs, Rita Cohen wrote: : That is some sound advice from Lori, who was in the same boat only a few weeks ago. Try not to over stress even if it seems so overwhelming right now - it's not good for your child and it's not good for you. You are not alone, and if it helps you and any other parent out there feel any better, I'm 38 and MY mom stills wants my results immediately whenever I go to the neph or lab. Personally, I call my wife first, since happy wife = happy life. You should also check out our companion site at www.igan.ca. There is a lot of information there that can really help you to sort out what is happening and prepare you for your visits to the neph. The more you know and understand, the better you are as your child's medical advocate, and that's the most important role you can play now. littlell523 wrote: I have a 12 year old that was just diagnosed about 4 weeks ago, how I cope is trying not to stress, which is really hard sometimes, the biggest thing is not to try and figure out what is/could happen in the next week, but get through each day as it comes. Don't get me wrong, I still have a hard time trying to do this all the time, but when I do it makes things easier on me and my daughter, the other way to cope is checking this group each day and posting questions and reading what others are saying. This is a great group of people and they are more than willing to help and support you, some of the people on this group have been dealing with this for quite sometime. How old is your child and when did you find out that he/she had IGAN? What treatment is being done? Lori > > Hello, I am new to this website. I was wondering anyone with a > child with iga and how are you coping with this illness. Please > reply thanks. 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 January 5, 2005 Report Share Posted January 5, 2005 Hi Tara, Thanks for writing back, my son also has been on prednisone since last may and he to has had alot problems, epscially with swelling in his legs, feet, belly pretty much all over. now he has unbelivable stretch marks. He was also tested for lupus because of some strange rashs. (thank god that was negative) This has been a very frightening expierence, I still feel num some days. I have been on every website I could find just to educate myself more about this disease. I glad I found this one, since I can ask and talk to someone with the same problems... My son is also weaning down on his prednisone. I am still concerned since his protein numbers are extremly high. Please let me know how your daughter is doing and how she has dealt with all this, espcially taking a lot of medications. " Newman, Tara " wrote:Hi . My n ame is Tara and I also have a daughter who was diagnosed with IGaN in March of 2004. Sorry it's taken me so long to respond. My daugher's initial flare up was pretty bad. She's been on prednisone since last March and is being tapered down very gradually. Not to scare you because I don't know the specifics of your child's case, but we have experienced quite a bit since the first representation of the disease. Much like your child, my daughter is my strength many days. She's such a trooper to be only 9. She's my hero everyday. Be strong and my motto is to take one day at a time and don't stress until the nephs tell you to. Be strong and look to the many wonderful people here who know exactly what you're dealing with and have a lot of helpful advice. Tara, mother of Allie Beth Re: Re: igan Rita Nucciarone wrote: happy wife = happy life - that's it - I'm sending you my husbands email address - you just have to pump that quote in his head - LOL Many hugs, Rita Cohen wrote: : That is some sound advice from Lori, who was in the same boat only a few weeks ago. Try not to over stress even if it seems so overwhelming right now - it's not good for your child and it's not good for you. You are not alone, and if it helps you and any other parent out there feel any better, I'm 38 and MY mom stills wants my results immediately whenever I go to the neph or lab. Personally, I call my wife first, since happy wife = happy life. You should also check out our companion site at www.igan.ca. There is a lot of information there that can really help you to sort out what is happening and prepare you for your visits to the neph. The more you know and understand, the better you are as your child's medical advocate, and that's the most important role you can play now. littlell523 wrote: I have a 12 year old that was just diagnosed about 4 weeks ago, how I cope is trying not to stress, which is really hard sometimes, the biggest thing is not to try and figure out what is/could happen in the next week, but get through each day as it comes. Don't get me wrong, I still have a hard time trying to do this all the time, but when I do it makes things easier on me and my daughter, the other way to cope is checking this group each day and posting questions and reading what others are saying. This is a great group of people and they are more than willing to help and support you, some of the people on this group have been dealing with this for quite sometime. How old is your child and when did you find out that he/she had IGAN? What treatment is being done? Lori > > Hello, I am new to this website. I was wondering anyone with a > child with iga and how are you coping with this illness. Please > reply thanks. 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 January 6, 2005 Report Share Posted January 6, 2005 Hi , much like you said my daughter has the unbelievable stretch marks too. She went from 87 lbs up to around 128 lbs right now,. We have actually had the swelling also. She gained 28 lbs in three weeks initially and we were put back in the hospital last Easter. She was given infusions of albumin (protein) and dieretics. Her protein at that time I believe was 3+. When we were discharged at that point, she started cyclophosphamide (cytoxan - chemo). She did really well considering what it was. Her hair had always been very thick and the worse thing was we had to have ten inches of her hair cut which she donated to the locks of love. She was never nauseated or anything like that. Now, we are down to 10 ml of orapred every other day and go back to her doctors in Cincinnati in around two weeks. At our last visit, they couldn't even find trace amounts of protein. So, everything her doctors are doing have made a positive difference. Much like you, I feel num on a lot of days, but you do the best you can. She is like I said my hero. She's been such a trooper. She is truly an inspirational child. Aside from this major thing, she's otherwise very healthy. She plays basketball and on the academic team. I think as a parent, you have to stay positive for them. There's still many sleepless nights for me and days when she sneezes or coughs that I freak out, but she'll say mom, it's okay. I know especially for me, when we were at Children's Hospital and I looked around and saw all these children who were terminal or there for some experimental, last ditch hope, it gave me comfort to know that what she has is treatable and manageable and worst case scenario, may have to someday, hopefully not, have a transplant, I try not to focus on that and live each day the best we can and deal with whatever we need to at the time. Keep me updated. Thanks, Tara Re: Re: igan Rita Nucciarone wrote: happy wife = happy life - that's it - I'm sending you my husbands email address - you just have to pump that quote in his head - LOL Many hugs, Rita Cohen wrote: : That is some sound advice from Lori, who was in the same boat only a few weeks ago. Try not to over stress even if it seems so overwhelming right now - it's not good for your child and it's not good for you. You are not alone, and if it helps you and any other parent out there feel any better, I'm 38 and MY mom stills wants my results immediately whenever I go to the neph or lab. Personally, I call my wife first, since happy wife = happy life. You should also check out our companion site at www.igan.ca. There is a lot of information there that can really help you to sort out what is happening and prepare you for your visits to the neph. The more you know and understand, the better you are as your child's medical advocate, and that's the most important role you can play now. littlell523 wrote: I have a 12 year old that was just diagnosed about 4 weeks ago, how I cope is trying not to stress, which is really hard sometimes, the biggest thing is not to try and figure out what is/could happen in the next week, but get through each day as it comes. Don't get me wrong, I still have a hard time trying to do this all the time, but when I do it makes things easier on me and my daughter, the other way to cope is checking this group each day and posting questions and reading what others are saying. This is a great group of people and they are more than willing to help and support you, some of the people on this group have been dealing with this for quite sometime. How old is your child and when did you find out that he/she had IGAN? What treatment is being done? Lori > > Hello, I am new to this website. I was wondering anyone with a > child with iga and how are you coping with this illness. Please > reply thanks. 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 January 6, 2005 Report Share Posted January 6, 2005 Hi , Prednisone is a serious drug with serious side effects without question, but also a miracle drug for many who respond to it. I am sorry that your son has not seemed to respond like we would have hoped. How high are your son's protein levels now? Some people do not respond to Prednisone for some reason. Has your Neph discussed Cellcept or any other treatment? Please keep us posted on how he is doing. In a message dated 1/5/2005 9:16:20 PM Pacific Standard Time, ssncp@... writes: > > Hi Tara, Thanks for writing back, my son also has been on prednisone since > last may and he to has had alot problems, epscially with swelling in his > legs, feet, belly pretty much all over. now he has unbelivable stretch marks. He > was also tested for lupus because of some strange rashs. (thank god that > was negative) This has been a very frightening expierence, I still feel num > some days. I have been on every website I could find just to educate myself > more about this disease. I glad I found this one, since I can ask and talk to > someone with the same problems... My son is also weaning down on his > prednisone. I am still concerned since his protein numbers are extremly high. Please > let me know how your daughter is doing and how she has dealt with all this, > espcially taking a lot of medications. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2005 Report Share Posted January 9, 2005 Hi Tara, What great news that no protein was found. Will she be coming off her medications soon? , is still having complications from his meds or from iga related. This weekend he has that rash on his face and his skin feels hot, his face is so red. I put cortisone cream on him. I noticed he was expierencing back pain (but he won't admit that to me) he made some excuse. I get so worried because I know he just wants to keep up with his friends... As for his prednisone tapering (now has cataract in eye) I have to wonder why when his protein levels are so high still. The neph did say the cozzar also helps with protein, except now he gets dizzy spells and palpitations when his activity is to much. (note now given to gym teacher). Did your daughter expierence any of these other symptons? Sincerly, " Newman, Tara " wrote:Hi , much like you said my daughter has the unbelievable stretch marks too. She went from 87 lbs up to around 128 lbs right now,. We have actually had the swelling also. She gained 28 lbs in three weeks initially and we were put back in the hospital last Easter. She was given infusions of albumin (protein) and dieretics. Her protein at that time I believe was 3+. When we were discharged at that point, she started cyclophosphamide (cytoxan - chemo). She did really well considering what it was. Her hair had always been very thick and the worse thing was we had to have ten inches of her hair cut which she donated to the locks of love. She was never nauseated or anything like that. Now, we are down to 10 ml of orapred every other day and go back to her doctors in Cincinnati in around two weeks. At our last visit, they couldn't even find trace amounts of protein. So, everything her doctors are doing have made a positive difference. Much like you, I feel num on a lot of days, but you do the best you can. She is like I said my hero. She's been such a trooper. She is truly an inspirational child. Aside from this major thing, she's otherwise very healthy. She plays basketball and on the academic team. I think as a parent, you have to stay positive for them. There's still many sleepless nights for me and days when she sneezes or coughs that I freak out, but she'll say mom, it's okay. I know especially for me, when we were at Children's Hospital and I looked around and saw all these children who were terminal or there for some experimental, last ditch hope, it gave me comfort to know that what she has is treatable and manageable and worst case scenario, may have to someday, hopefully not, have a transplant, I try not to focus on that and live each day the best we can and deal with whatever we need to at the time. Keep me updated. Thanks, Tara Re: Re: igan Rita Nucciarone wrote: happy wife = happy life - that's it - I'm sending you my husbands email address - you just have to pump that quote in his head - LOL Many hugs, Rita Cohen wrote: : That is some sound advice from Lori, who was in the same boat only a few weeks ago. Try not to over stress even if it seems so overwhelming right now - it's not good for your child and it's not good for you. You are not alone, and if it helps you and any other parent out there feel any better, I'm 38 and MY mom stills wants my results immediately whenever I go to the neph or lab. Personally, I call my wife first, since happy wife = happy life. You should also check out our companion site at www.igan.ca. There is a lot of information there that can really help you to sort out what is happening and prepare you for your visits to the neph. The more you know and understand, the better you are as your child's medical advocate, and that's the most important role you can play now. littlell523 wrote: I have a 12 year old that was just diagnosed about 4 weeks ago, how I cope is trying not to stress, which is really hard sometimes, the biggest thing is not to try and figure out what is/could happen in the next week, but get through each day as it comes. Don't get me wrong, I still have a hard time trying to do this all the time, but when I do it makes things easier on me and my daughter, the other way to cope is checking this group each day and posting questions and reading what others are saying. This is a great group of people and they are more than willing to help and support you, some of the people on this group have been dealing with this for quite sometime. How old is your child and when did you find out that he/she had IGAN? What treatment is being done? Lori > > Hello, I am new to this website. I was wondering anyone with a > child with iga and how are you coping with this illness. Please > reply thanks. 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 January 9, 2005 Report Share Posted January 9, 2005 Hi Tara, What great news that no protein was found. Will she be coming off her medications soon? , is still having complications from his meds or from iga related. This weekend he has that rash on his face and his skin feels hot, his face is so red. I put cortisone cream on him. I noticed he was expierencing back pain (but he won't admit that to me) he made some excuse. I get so worried because I know he just wants to keep up with his friends... As for his prednisone tapering (now has cataract in eye) I have to wonder why when his protein levels are so high still. The neph did say the cozzar also helps with protein, except now he gets dizzy spells and palpitations when his activity is to much. (note now given to gym teacher). Did your daughter expierence any of these other symptons? Sincerly, " Newman, Tara " wrote:Hi , much like you said my daughter has the unbelievable stretch marks too. She went from 87 lbs up to around 128 lbs right now,. We have actually had the swelling also. She gained 28 lbs in three weeks initially and we were put back in the hospital last Easter. She was given infusions of albumin (protein) and dieretics. Her protein at that time I believe was 3+. When we were discharged at that point, she started cyclophosphamide (cytoxan - chemo). She did really well considering what it was. Her hair had always been very thick and the worse thing was we had to have ten inches of her hair cut which she donated to the locks of love. She was never nauseated or anything like that. Now, we are down to 10 ml of orapred every other day and go back to her doctors in Cincinnati in around two weeks. At our last visit, they couldn't even find trace amounts of protein. So, everything her doctors are doing have made a positive difference. Much like you, I feel num on a lot of days, but you do the best you can. She is like I said my hero. She's been such a trooper. She is truly an inspirational child. Aside from this major thing, she's otherwise very healthy. She plays basketball and on the academic team. I think as a parent, you have to stay positive for them. There's still many sleepless nights for me and days when she sneezes or coughs that I freak out, but she'll say mom, it's okay. I know especially for me, when we were at Children's Hospital and I looked around and saw all these children who were terminal or there for some experimental, last ditch hope, it gave me comfort to know that what she has is treatable and manageable and worst case scenario, may have to someday, hopefully not, have a transplant, I try not to focus on that and live each day the best we can and deal with whatever we need to at the time. Keep me updated. Thanks, Tara Re: Re: igan Rita Nucciarone wrote: happy wife = happy life - that's it - I'm sending you my husbands email address - you just have to pump that quote in his head - LOL Many hugs, Rita Cohen wrote: : That is some sound advice from Lori, who was in the same boat only a few weeks ago. Try not to over stress even if it seems so overwhelming right now - it's not good for your child and it's not good for you. You are not alone, and if it helps you and any other parent out there feel any better, I'm 38 and MY mom stills wants my results immediately whenever I go to the neph or lab. Personally, I call my wife first, since happy wife = happy life. You should also check out our companion site at www.igan.ca. There is a lot of information there that can really help you to sort out what is happening and prepare you for your visits to the neph. The more you know and understand, the better you are as your child's medical advocate, and that's the most important role you can play now. littlell523 wrote: I have a 12 year old that was just diagnosed about 4 weeks ago, how I cope is trying not to stress, which is really hard sometimes, the biggest thing is not to try and figure out what is/could happen in the next week, but get through each day as it comes. Don't get me wrong, I still have a hard time trying to do this all the time, but when I do it makes things easier on me and my daughter, the other way to cope is checking this group each day and posting questions and reading what others are saying. This is a great group of people and they are more than willing to help and support you, some of the people on this group have been dealing with this for quite sometime. How old is your child and when did you find out that he/she had IGAN? What treatment is being done? Lori > > Hello, I am new to this website. I was wondering anyone with a > child with iga and how are you coping with this illness. Please > reply thanks. 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 January 10, 2005 Report Share Posted January 10, 2005 Hi Tara, Cozaar is a BP med. It is one of several that I take in fact. I do hope Allie can reduce her Prednisone at her next visit. I really have so much respect for those of you who have children with IgAN. To me, I think that would be harder than me having it. In a message dated 1/10/2005 9:17:46 AM Pacific Standard Time, tnewman@... writes: > I'm not familiar > with Cozzsar. Is it another immunosuppressant drug? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2005 Report Share Posted January 10, 2005 Hi Tara, I am a big believer in counting my blessings! I do so every single day. It does help keep things in perspective doesn't it? In a message dated 1/10/2005 10:27:53 AM Pacific Standard Time, tnewman@... writes: > It is hard seeing your child go through something that you don't have any > control over. Like I said in an earlier post, after being at Children's and > seeing so many patients that were in much worse situations than us, I thank > God everyday. He has truly blessed us 10,000 times over. I think it's easy > to lose perspective sometimes. I'm just thankful and thanks to everyone for > your concerns and quick responses. > Tara, mom to allie Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2005 Report Share Posted January 10, 2005 Hi , We go back to Cincinnati on the 22nd of this month. Hopefully they will reduce her prednisone at least 3 ml. Allie's cheecks are sometimes noticeably very rosey. We'll take her blood pressure and it will be okay. As I said, she's been on these since March of 2004. We also took the cytoxan (chemo) which I would like to think contributed to the great results we've had. It's hard seeing your child take the medications that ours have, but I feel like when you see positive results, it helps. I'm not familiar with Cozzsar. Is it another immunosuppressant drug? They check her eyes each time we go, but thank the good Lord, nothing has gone wrong there. I know how you feel. I think Allie hesitates telling me sometimes if she suspects something wrong. She's been really great though about telling, maybe it's because she gets scared, I don't know. She heard something crack in her back while she was jumping rope at school the other day. I freaked out thinking she had cracked something in her back. We took her straight to the pediatrician. She said she felt very strongly it was just a pulled muscle based on the area that Allie said hurt. She's fine and dandy now. I think we as parents have a really hard time reaching a comfort zone. I know I was overprotective before, but I find myself worrying over very minute things. I have really bad anxiety attacks sometimes. Like I said, I thank God everyday. He has blessed my family over and over. Tara Re: Re: igan Rita Nucciarone wrote: happy wife = happy life - that's it - I'm sending you my husbands email address - you just have to pump that quote in his head - LOL Many hugs, Rita Cohen wrote: : That is some sound advice from Lori, who was in the same boat only a few weeks ago. Try not to over stress even if it seems so overwhelming right now - it's not good for your child and it's not good for you. You are not alone, and if it helps you and any other parent out there feel any better, I'm 38 and MY mom stills wants my results immediately whenever I go to the neph or lab. Personally, I call my wife first, since happy wife = happy life. You should also check out our companion site at www.igan.ca. There is a lot of information there that can really help you to sort out what is happening and prepare you for your visits to the neph. The more you know and understand, the better you are as your child's medical advocate, and that's the most important role you can play now. littlell523 wrote: I have a 12 year old that was just diagnosed about 4 weeks ago, how I cope is trying not to stress, which is really hard sometimes, the biggest thing is not to try and figure out what is/could happen in the next week, but get through each day as it comes. Don't get me wrong, I still have a hard time trying to do this all the time, but when I do it makes things easier on me and my daughter, the other way to cope is checking this group each day and posting questions and reading what others are saying. This is a great group of people and they are more than willing to help and support you, some of the people on this group have been dealing with this for quite sometime. How old is your child and when did you find out that he/she had IGAN? What treatment is being done? Lori > > Hello, I am new to this website. I was wondering anyone with a > child with iga and how are you coping with this illness. Please > reply thanks. 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 January 10, 2005 Report Share Posted January 10, 2005 Hi , We go back to Cincinnati on the 22nd of this month. Hopefully they will reduce her prednisone at least 3 ml. Allie's cheecks are sometimes noticeably very rosey. We'll take her blood pressure and it will be okay. As I said, she's been on these since March of 2004. We also took the cytoxan (chemo) which I would like to think contributed to the great results we've had. It's hard seeing your child take the medications that ours have, but I feel like when you see positive results, it helps. I'm not familiar with Cozzsar. Is it another immunosuppressant drug? They check her eyes each time we go, but thank the good Lord, nothing has gone wrong there. I know how you feel. I think Allie hesitates telling me sometimes if she suspects something wrong. She's been really great though about telling, maybe it's because she gets scared, I don't know. She heard something crack in her back while she was jumping rope at school the other day. I freaked out thinking she had cracked something in her back. We took her straight to the pediatrician. She said she felt very strongly it was just a pulled muscle based on the area that Allie said hurt. She's fine and dandy now. I think we as parents have a really hard time reaching a comfort zone. I know I was overprotective before, but I find myself worrying over very minute things. I have really bad anxiety attacks sometimes. Like I said, I thank God everyday. He has blessed my family over and over. Tara Re: Re: igan Rita Nucciarone wrote: happy wife = happy life - that's it - I'm sending you my husbands email address - you just have to pump that quote in his head - LOL Many hugs, Rita Cohen wrote: : That is some sound advice from Lori, who was in the same boat only a few weeks ago. Try not to over stress even if it seems so overwhelming right now - it's not good for your child and it's not good for you. You are not alone, and if it helps you and any other parent out there feel any better, I'm 38 and MY mom stills wants my results immediately whenever I go to the neph or lab. Personally, I call my wife first, since happy wife = happy life. You should also check out our companion site at www.igan.ca. There is a lot of information there that can really help you to sort out what is happening and prepare you for your visits to the neph. The more you know and understand, the better you are as your child's medical advocate, and that's the most important role you can play now. littlell523 wrote: I have a 12 year old that was just diagnosed about 4 weeks ago, how I cope is trying not to stress, which is really hard sometimes, the biggest thing is not to try and figure out what is/could happen in the next week, but get through each day as it comes. Don't get me wrong, I still have a hard time trying to do this all the time, but when I do it makes things easier on me and my daughter, the other way to cope is checking this group each day and posting questions and reading what others are saying. This is a great group of people and they are more than willing to help and support you, some of the people on this group have been dealing with this for quite sometime. How old is your child and when did you find out that he/she had IGAN? What treatment is being done? Lori > > Hello, I am new to this website. I was wondering anyone with a > child with iga and how are you coping with this illness. Please > reply thanks. 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 January 10, 2005 Report Share Posted January 10, 2005 Hi , We go back to Cincinnati on the 22nd of this month. Hopefully they will reduce her prednisone at least 3 ml. Allie's cheecks are sometimes noticeably very rosey. We'll take her blood pressure and it will be okay. As I said, she's been on these since March of 2004. We also took the cytoxan (chemo) which I would like to think contributed to the great results we've had. It's hard seeing your child take the medications that ours have, but I feel like when you see positive results, it helps. I'm not familiar with Cozzsar. Is it another immunosuppressant drug? They check her eyes each time we go, but thank the good Lord, nothing has gone wrong there. I know how you feel. I think Allie hesitates telling me sometimes if she suspects something wrong. She's been really great though about telling, maybe it's because she gets scared, I don't know. She heard something crack in her back while she was jumping rope at school the other day. I freaked out thinking she had cracked something in her back. We took her straight to the pediatrician. She said she felt very strongly it was just a pulled muscle based on the area that Allie said hurt. She's fine and dandy now. I think we as parents have a really hard time reaching a comfort zone. I know I was overprotective before, but I find myself worrying over very minute things. I have really bad anxiety attacks sometimes. Like I said, I thank God everyday. He has blessed my family over and over. Tara Re: Re: igan Rita Nucciarone wrote: happy wife = happy life - that's it - I'm sending you my husbands email address - you just have to pump that quote in his head - LOL Many hugs, Rita Cohen wrote: : That is some sound advice from Lori, who was in the same boat only a few weeks ago. Try not to over stress even if it seems so overwhelming right now - it's not good for your child and it's not good for you. You are not alone, and if it helps you and any other parent out there feel any better, I'm 38 and MY mom stills wants my results immediately whenever I go to the neph or lab. Personally, I call my wife first, since happy wife = happy life. You should also check out our companion site at www.igan.ca. There is a lot of information there that can really help you to sort out what is happening and prepare you for your visits to the neph. The more you know and understand, the better you are as your child's medical advocate, and that's the most important role you can play now. littlell523 wrote: I have a 12 year old that was just diagnosed about 4 weeks ago, how I cope is trying not to stress, which is really hard sometimes, the biggest thing is not to try and figure out what is/could happen in the next week, but get through each day as it comes. Don't get me wrong, I still have a hard time trying to do this all the time, but when I do it makes things easier on me and my daughter, the other way to cope is checking this group each day and posting questions and reading what others are saying. This is a great group of people and they are more than willing to help and support you, some of the people on this group have been dealing with this for quite sometime. How old is your child and when did you find out that he/she had IGAN? What treatment is being done? Lori > > Hello, I am new to this website. I was wondering anyone with a > child with iga and how are you coping with this illness. Please > reply thanks. 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 January 10, 2005 Report Share Posted January 10, 2005 It is hard seeing your child go through something that you don't have any control over. Like I said in an earlier post, after being at Children's and seeing so many patients that were in much worse situations than us, I thank God everyday. He has truly blessed us 10,000 times over. I think it's easy to lose perspective sometimes. I'm just thankful and thanks to everyone for your concerns and quick responses. Tara, mom to allie Beth Re: Re: igan Hi Tara, Cozaar is a BP med. It is one of several that I take in fact. I do hope Allie can reduce her Prednisone at her next visit. I really have so much respect for those of you who have children with IgAN. To me, I think that would be harder than me having it. In a message dated 1/10/2005 9:17:46 AM Pacific Standard Time, tnewman@... writes: > I'm not familiar > with Cozzsar. Is it another immunosuppressant drug? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2005 Report Share Posted January 10, 2005 It is hard seeing your child go through something that you don't have any control over. Like I said in an earlier post, after being at Children's and seeing so many patients that were in much worse situations than us, I thank God everyday. He has truly blessed us 10,000 times over. I think it's easy to lose perspective sometimes. I'm just thankful and thanks to everyone for your concerns and quick responses. Tara, mom to allie Beth Re: Re: igan Hi Tara, Cozaar is a BP med. It is one of several that I take in fact. I do hope Allie can reduce her Prednisone at her next visit. I really have so much respect for those of you who have children with IgAN. To me, I think that would be harder than me having it. In a message dated 1/10/2005 9:17:46 AM Pacific Standard Time, tnewman@... writes: > I'm not familiar > with Cozzsar. Is it another immunosuppressant drug? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2005 Report Share Posted January 10, 2005 It is hard seeing your child go through something that you don't have any control over. Like I said in an earlier post, after being at Children's and seeing so many patients that were in much worse situations than us, I thank God everyday. He has truly blessed us 10,000 times over. I think it's easy to lose perspective sometimes. I'm just thankful and thanks to everyone for your concerns and quick responses. Tara, mom to allie Beth Re: Re: igan Hi Tara, Cozaar is a BP med. It is one of several that I take in fact. I do hope Allie can reduce her Prednisone at her next visit. I really have so much respect for those of you who have children with IgAN. To me, I think that would be harder than me having it. In a message dated 1/10/2005 9:17:46 AM Pacific Standard Time, tnewman@... writes: > I'm not familiar > with Cozzsar. Is it another immunosuppressant drug? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2005 Report Share Posted January 10, 2005 Hi , That is a pretty good drop in protein, so at least it is going in the right direction, but it is still too high. It has to break your heart to see him taking so many medications. I am sorry has to go through this. I am very glad to hear that this site has provided you with the support you need though. To answer your questions, I have had IgAN for around 30 years. I had blood and protein in my urine as a young teenager. I don't have an exact year but it was either late Jr High or early High School so I have had it around 30 years. I did not start any treatment until 1987 though when I started on BP meds. I really did very well up until around 2000 when I started my decline and I am now at 18% kidney function. In a message dated 1/10/2005 4:37:24 PM Pacific Standard Time, ssncp@... writes: > Hi , Sorry it took so long to get back to you as there are so many > emails to go thru. Micheal protein levels started out with 16,000 miligrams and > with 60 mg prednisone along with iv solumedrol tx he has come down to 6,700 > and we seem to be stuck the last 3 months at this level. His neph did > mention other tx with worse side effects and I am not so sure I want to put him > through that, it was bad enough consenting to the 9 different medications he was > taking, and he sure did have many side effects and was so sick for the first > 5 months since his biopsy last may. I was in such a fog for the longest > time, I couldn't believe this was happening to him, it broke my heart. I have > finally come to terms with this and have been trying to learn as much as > possible... This website has helped me so much, just being able to commuicate > with other people with igan. I do hope your doing better and if you don't mind > my asking how long have you had igan and how long have you been on > treatment? Thanks so much. Sincerly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2005 Report Share Posted January 10, 2005 Hi Tara, cozzar is a blood pressure med, which also helps with his protein levels, which I just learned the other day from our neph visit... susan " Newman, Tara " wrote:Hi , We go back to Cincinnati on the 22nd of this month. Hopefully they will reduce her prednisone at least 3 ml. Allie's cheecks are sometimes noticeably very rosey. We'll take her blood pressure and it will be okay. As I said, she's been on these since March of 2004. We also took the cytoxan (chemo) which I would like to think contributed to the great results we've had. It's hard seeing your child take the medications that ours have, but I feel like when you see positive results, it helps. I'm not familiar with Cozzsar. Is it another immunosuppressant drug? They check her eyes each time we go, but thank the good Lord, nothing has gone wrong there. I know how you feel. I think Allie hesitates telling me sometimes if she suspects something wrong. She's been really great though about telling, maybe it's because she gets scared, I don't know. She heard something crack in her back while she was jumping rope at school the other day. I freaked out thinking she had cracked something in her back. We took her straight to the pediatrician. She said she felt very strongly it was just a pulled muscle based on the area that Allie said hurt. She's fine and dandy now. I think we as parents have a really hard time reaching a comfort zone. I know I was overprotective before, but I find myself worrying over very minute things. I have really bad anxiety attacks sometimes. Like I said, I thank God everyday. He has blessed my family over and over. Tara Re: Re: igan Rita Nucciarone wrote: happy wife = happy life - that's it - I'm sending you my husbands email address - you just have to pump that quote in his head - LOL Many hugs, Rita Cohen wrote: : That is some sound advice from Lori, who was in the same boat only a few weeks ago. Try not to over stress even if it seems so overwhelming right now - it's not good for your child and it's not good for you. You are not alone, and if it helps you and any other parent out there feel any better, I'm 38 and MY mom stills wants my results immediately whenever I go to the neph or lab. Personally, I call my wife first, since happy wife = happy life. You should also check out our companion site at www.igan.ca. There is a lot of information there that can really help you to sort out what is happening and prepare you for your visits to the neph. The more you know and understand, the better you are as your child's medical advocate, and that's the most important role you can play now. littlell523 wrote: I have a 12 year old that was just diagnosed about 4 weeks ago, how I cope is trying not to stress, which is really hard sometimes, the biggest thing is not to try and figure out what is/could happen in the next week, but get through each day as it comes. Don't get me wrong, I still have a hard time trying to do this all the time, but when I do it makes things easier on me and my daughter, the other way to cope is checking this group each day and posting questions and reading what others are saying. This is a great group of people and they are more than willing to help and support you, some of the people on this group have been dealing with this for quite sometime. How old is your child and when did you find out that he/she had IGAN? What treatment is being done? Lori > > Hello, I am new to this website. I was wondering anyone with a > child with iga and how are you coping with this illness. Please > reply thanks. 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 January 10, 2005 Report Share Posted January 10, 2005 Boy Cy, that sounds SO good! What a wonderful was to spend a cold Sunday afternoon. I am glad you got a chance to kick back and relax! In a message dated 1/10/2005 7:20:49 P.M. Pacific Standard Time, cyashleywebb@... writes: I spent Sunday afternoon sprawled with a book - and boy it felt good! Cy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2005 Report Share Posted January 10, 2005 Hi Tara, I'm glad Allie's injuries were nothing serious. I hear you when you worry about Allie not telling you whether something is wrong. Sometimes I think our kids try to protect us! I'll never forget when the school nurse called me and told that came in with a headache (this was back when his BP was very high) and asked to have his BP taken. It was such an enormous relief to know he was doing the right thing! The whole comfort zone thing is pretty foreign to me. I know I'm always waiting for the other shoe to drop (given my live - I think whoever isdropping those shoes is a multi-legged beast). However, there's small comforts that provide a lot of milage. I spent Sunday afternoon sprawled with a book - and boy it felt good! Cy Re: Re: igan > > > > > Rita Nucciarone wrote: happy wife = happy life - > > that's it - I'm sending you my husbands email address - you just have > to pump that quote in his head - LOL Many hugs, Rita > > > Cohen wrote: > : > > That is some sound advice from Lori, who was in the same boat only a few > weeks ago. Try not to over stress even if it seems so overwhelming right now > - it's not good for your child and it's not good for you. You are not > alone, and if it helps you and any other parent out there feel any better, > I'm 38 and MY mom stills wants my results immediately whenever I go to the > neph or lab. Personally, I call my wife first, since happy wife = happy > life. > > You should also check out our companion site at www.igan.ca. There is a lot > of information there that can really help you to sort out what is happening > and prepare you for your visits to the neph. The more you know and > understand, the better you are as your child's medical advocate, and that's > the most important role you can play now. > > > > littlell523 wrote: > > I have a 12 year old that was just diagnosed about 4 weeks ago, how > I cope is trying not to stress, which is really hard sometimes, the > biggest thing is not to try and figure out what is/could happen in > the next week, but get through each day as it comes. Don't get me > wrong, I still have a hard time trying to do this all the time, but > when I do it makes things easier on me and my daughter, the other > way to cope is checking this group each day and posting questions > and reading what others are saying. This is a great group of people > and they are more than willing to help and support you, some of the > people on this group have been dealing with this for quite > sometime. > > How old is your child and when did you find out that he/she had IGAN? > What treatment is being done? > > Lori > > > > > > > > > Hello, I am new to this website. I was wondering anyone with a > > child with iga and how are you coping with this illness. Please > > reply thanks. > > > > > > 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 January 11, 2005 Report Share Posted January 11, 2005 Hi , my daughter is on 10 mg of enalapril daily. It has really seemed to do the trick I guess. I just pray everytning goes well on the 22nd. She was complaining of her feet hurting really bad last night, but she had went to basketball practice for a hour and a half and maybe that was the cause behind that. I checked her legs and feet for swelling and fluid retention, but there wasn't any. I had her to elevate them and stay off them while I cooked supper and she didn't complain anymore, so maybe that helped. Tara, Allie's mom Re: Re: igan Rita Nucciarone wrote: happy wife = happy life - that's it - I'm sending you my husbands email address - you just have to pump that quote in his head - LOL Many hugs, Rita Cohen wrote: : That is some sound advice from Lori, who was in the same boat only a few weeks ago. Try not to over stress even if it seems so overwhelming right now - it's not good for your child and it's not good for you. You are not alone, and if it helps you and any other parent out there feel any better, I'm 38 and MY mom stills wants my results immediately whenever I go to the neph or lab. Personally, I call my wife first, since happy wife = happy life. You should also check out our companion site at www.igan.ca. There is a lot of information there that can really help you to sort out what is happening and prepare you for your visits to the neph. The more you know and understand, the better you are as your child's medical advocate, and that's the most important role you can play now. littlell523 wrote: I have a 12 year old that was just diagnosed about 4 weeks ago, how I cope is trying not to stress, which is really hard sometimes, the biggest thing is not to try and figure out what is/could happen in the next week, but get through each day as it comes. Don't get me wrong, I still have a hard time trying to do this all the time, but when I do it makes things easier on me and my daughter, the other way to cope is checking this group each day and posting questions and reading what others are saying. This is a great group of people and they are more than willing to help and support you, some of the people on this group have been dealing with this for quite sometime. How old is your child and when did you find out that he/she had IGAN? What treatment is being done? Lori > > Hello, I am new to this website. I was wondering anyone with a > child with iga and how are you coping with this illness. Please > reply thanks. 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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