Guest guest Posted February 10, 2004 Report Share Posted February 10, 2004 Hi Welcome to the group. There's a good chance it will go into remission once the acute phase passes. This is often what happens with children. The IV steroid treatment may help make this happen. Whether it ever goes away completely is something that can only be known by a repeat biopsy later on. It probably goes dormant, but it could become active again when he gets an upper respiratory infection. We have many mothers on the group of a child who has gone through this. We also have mothers who post in the Pediatric IgAN forum in the IgAN Cafe. You can easily read other cases there. We're all the same organization, so it doesn't matter whether you use this email group or the IgAN Cafe. Pierre Hi to everyone > Hi, > > I just joined the group. I saw the support group in the website and > immediately joined. My son (9 yrs old) has just been diagnosed with > IgAN through biopsy. I'm meeting with his doctor tomorrow to get more > details on his present condition. with the preliminary result, the doctor > said, they are going to put him on a " drug " treatment(I think she said, > steroid). First through IV for 3 consecutive days about 2 hrs each time and > every other day to be taken orally. The next IV session will be after 2 > months and then the next one will be after 3 months. > > What will be good questions to asked to get his real state in IgAN ? Is > there a chance for IgAN to totally heal? > > Thanks a lot for having a group like this. I feel supported already. > > Regards, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2004 Report Share Posted February 10, 2004 Thanks so much Pierre for the information. Remission means it may go away but may come back again, correct? So there's no such thing as totally gone? I will also visit the IgAN Cafe. the website is also very informative. Thanks again. > >Reply-To: iga-nephropathy >To: <iga-nephropathy > >Subject: Re: Hi to everyone >Date: Tue, 10 Feb 2004 14:52:01 -0500 >MIME-Version: 1.0 >X-Sender: pgl-groups@... >Received: from n5.grp.scd.yahoo.com ([66.218.66.89]) by mc3-f11.hotmail.com >with Microsoft SMTPSVC(5.0.2195.6824); Tue, 10 Feb 2004 11:54:05 -0800 >Received: from [66.218.66.157] by n5.grp.scd.yahoo.com with NNFMP; 10 Feb >2004 19:52:15 -0000 >Received: (qmail 36790 invoked from network); 10 Feb 2004 19:52:12 -0000 >Received: from unknown (66.218.66.166) by m17.grp.scd.yahoo.com with QMQP; >10 Feb 2004 19:52:12 -0000 >Received: from unknown (HELO tomts20-srv.bellnexxia.net) (209.226.175.74) >by mta5.grp.scd.yahoo.com with SMTP; 10 Feb 2004 19:52:12 -0000 >Received: from office ([64.230.146.215]) by tomts20-srv.bellnexxia.net > (InterMail vM.5.01.06.05 201-253-122-0824) with SMTP > id <20040210195200.BRTO20179.tomts20-srv.bellnexxia.net@office> > for <iga-nephropathy >; Tue, 10 Feb 2004 14:52:00 >-0500 >X-Message-Info: JGTYoYF78jEgPEo9ODRFFO+j85p43Txo >X-eGroups-Return: >sentto-2346229-24215-1076442733-cyncparas=hotmail.com@... >X-Apparently-To: iga-nephropathy >Message-ID: <047e01c3f00f$59a83f40$aa19fea9@office> >References: >X-MSMail-Priority: Normal >X-Mailer: Microsoft Outlook Express 6.00.2800.1158 >X-MimeOLE: Produced By Microsoft MimeOLE V6.00.2800.1165 >X-eGroups-Remote-IP: 209.226.175.74 >X-Yahoo-Profile: subito_presto >Mailing-List: list iga-nephropathy ; contact >iga-nephropathy-owner >Delivered-To: mailing list iga-nephropathy >Precedence: bulk >List-Unsubscribe: <mailto:iga-nephropathy-unsubscribe > >Return-Path: >sentto-2346229-24215-1076442733-cyncparas=hotmail.com@... >X-OriginalArrivalTime: 10 Feb 2004 19:54:05.0671 (UTC) >FILETIME=[A39DCF70:01C3F00F] > >Hi > >Welcome to the group. > >There's a good chance it will go into remission once the acute phase >passes. >This is often what happens with children. The IV steroid treatment may help >make this happen. Whether it ever goes away completely is something that >can >only be known by a repeat biopsy later on. It probably goes dormant, but it >could become active again when he gets an upper respiratory infection. We >have many mothers on the group of a child who has gone through this. We >also >have mothers who post in the Pediatric IgAN forum in the IgAN Cafe. You can >easily read other cases there. We're all the same organization, so it >doesn't matter whether you use this email group or the IgAN Cafe. > >Pierre > > Hi to everyone > > > > Hi, > > > > I just joined the group. I saw the support group in the website and > > immediately joined. My son (9 yrs old) has just been diagnosed >with > > IgAN through biopsy. I'm meeting with his doctor tomorrow to get more > > details on his present condition. with the preliminary result, the >doctor > > said, they are going to put him on a " drug " treatment(I think she said, > > steroid). First through IV for 3 consecutive days about 2 hrs each time >and > > every other day to be taken orally. The next IV session will be after 2 > > months and then the next one will be after 3 months. > > > > What will be good questions to asked to get his real state in IgAN ? Is > > there a chance for IgAN to totally heal? > > > > Thanks a lot for having a group like this. I feel supported already. > > > > Regards, > > > > > > _________________________________________________________________ Choose now from 4 levels of MSN Hotmail Extra Storage - no more account overload! http://click.atdmt.com/AVE/go/onm00200362ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2004 Report Share Posted February 11, 2004 You're welcome . Nobody really knows if it can ever go away completely. Since there appears to be some genetics involved, it probably never goes away completely. But we don't really know that. There isn't very much data available on how kids who have IgAN fare later on in life. IgAN is a funny disease in that people do not need to have the more obvious " flare-up " type of symptoms in order for it to progress ever so slowly. Now, there was a Japanese study a couple of years ago in which they did repeat biopsies on a few people, and the lesions had disappeared in some. Pierre Hi to everyone > > > > > > > Hi, > > > > > > I just joined the group. I saw the support group in the website and > > > immediately joined. My son (9 yrs old) has just been diagnosed > >with > > > IgAN through biopsy. I'm meeting with his doctor tomorrow to get more > > > details on his present condition. with the preliminary result, the > >doctor > > > said, they are going to put him on a " drug " treatment(I think she said, > > > steroid). First through IV for 3 consecutive days about 2 hrs each time > >and > > > every other day to be taken orally. The next IV session will be after 2 > > > months and then the next one will be after 3 months. > > > > > > What will be good questions to asked to get his real state in IgAN ? Is > > > there a chance for IgAN to totally heal? > > > > > > Thanks a lot for having a group like this. I feel supported already. > > > > > > Regards, > > > > > > > > > > > > _________________________________________________________________ > Choose now from 4 levels of MSN Hotmail Extra Storage - no more account > overload! http://click.atdmt.com/AVE/go/onm00200362ave/direct/01/ > > > > 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 February 11, 2004 Report Share Posted February 11, 2004 You're welcome . Nobody really knows if it can ever go away completely. Since there appears to be some genetics involved, it probably never goes away completely. But we don't really know that. There isn't very much data available on how kids who have IgAN fare later on in life. IgAN is a funny disease in that people do not need to have the more obvious " flare-up " type of symptoms in order for it to progress ever so slowly. Now, there was a Japanese study a couple of years ago in which they did repeat biopsies on a few people, and the lesions had disappeared in some. Pierre Hi to everyone > > > > > > > Hi, > > > > > > I just joined the group. I saw the support group in the website and > > > immediately joined. My son (9 yrs old) has just been diagnosed > >with > > > IgAN through biopsy. I'm meeting with his doctor tomorrow to get more > > > details on his present condition. with the preliminary result, the > >doctor > > > said, they are going to put him on a " drug " treatment(I think she said, > > > steroid). First through IV for 3 consecutive days about 2 hrs each time > >and > > > every other day to be taken orally. The next IV session will be after 2 > > > months and then the next one will be after 3 months. > > > > > > What will be good questions to asked to get his real state in IgAN ? Is > > > there a chance for IgAN to totally heal? > > > > > > Thanks a lot for having a group like this. I feel supported already. > > > > > > Regards, > > > > > > > > > > > > _________________________________________________________________ > Choose now from 4 levels of MSN Hotmail Extra Storage - no more account > overload! http://click.atdmt.com/AVE/go/onm00200362ave/direct/01/ > > > > 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 February 11, 2004 Report Share Posted February 11, 2004 You're welcome . Nobody really knows if it can ever go away completely. Since there appears to be some genetics involved, it probably never goes away completely. But we don't really know that. There isn't very much data available on how kids who have IgAN fare later on in life. IgAN is a funny disease in that people do not need to have the more obvious " flare-up " type of symptoms in order for it to progress ever so slowly. Now, there was a Japanese study a couple of years ago in which they did repeat biopsies on a few people, and the lesions had disappeared in some. Pierre Hi to everyone > > > > > > > Hi, > > > > > > I just joined the group. I saw the support group in the website and > > > immediately joined. My son (9 yrs old) has just been diagnosed > >with > > > IgAN through biopsy. I'm meeting with his doctor tomorrow to get more > > > details on his present condition. with the preliminary result, the > >doctor > > > said, they are going to put him on a " drug " treatment(I think she said, > > > steroid). First through IV for 3 consecutive days about 2 hrs each time > >and > > > every other day to be taken orally. The next IV session will be after 2 > > > months and then the next one will be after 3 months. > > > > > > What will be good questions to asked to get his real state in IgAN ? Is > > > there a chance for IgAN to totally heal? > > > > > > Thanks a lot for having a group like this. I feel supported already. > > > > > > Regards, > > > > > > > > > > > > _________________________________________________________________ > Choose now from 4 levels of MSN Hotmail Extra Storage - no more account > overload! http://click.atdmt.com/AVE/go/onm00200362ave/direct/01/ > > > > 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 February 11, 2004 Report Share Posted February 11, 2004 Hi , Welcome to the group. I'm sorry you have reason to be here, but glad you found us. I'm here because of my 13 year old son who was diagnosed with a disease very similar to IgAN in many respects. We did the steroid IV route followed by oral pred every other day, and it has been a godsend. Never a day goes by that I am not very grateful that we bit the bullet and did the IVs. I was nervous as a cat going it, but is really was not that bad. Leaving the IV in place helped a lot! If you have questions, please fire away! To get at the " real state " of his IgAN, I suggest you read his biopsy report. If you're anything like me, this will be rough going. However, it contains a wealth of information. There are certain red flags you can look for such as the presence of what are called " crescents " , which are consistent with a rapidly downhill course (this is rare) and the extent of scarring. You can also look at his lab values - particularly his creatinine. The extent of proteinuria is also important - but it really does not have much to do with the state of his kidneys. Welcome again to the group! Cy Hi to everyone > Hi, > > I just joined the group. I saw the support group in the website and > immediately joined. My son (9 yrs old) has just been diagnosed with > IgAN through biopsy. I'm meeting with his doctor tomorrow to get more > details on his present condition. with the preliminary result, the doctor > said, they are going to put him on a " drug " treatment(I think she said, > steroid). First through IV for 3 consecutive days about 2 hrs each time and > every other day to be taken orally. The next IV session will be after 2 > months and then the next one will be after 3 months. > > What will be good questions to asked to get his real state in IgAN ? Is > there a chance for IgAN to totally heal? > > Thanks a lot for having a group like this. I feel supported already. > > Regards, > > > _________________________________________________________________ > Let the advanced features & services of MSN Internet Software maximize your > online time. http://click.atdmt.com/AVE/go/onm00200363ave/direct/01/ > > > > 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 February 11, 2004 Report Share Posted February 11, 2004 Hi , Welcome to the group. I'm sorry you have reason to be here, but glad you found us. I'm here because of my 13 year old son who was diagnosed with a disease very similar to IgAN in many respects. We did the steroid IV route followed by oral pred every other day, and it has been a godsend. Never a day goes by that I am not very grateful that we bit the bullet and did the IVs. I was nervous as a cat going it, but is really was not that bad. Leaving the IV in place helped a lot! If you have questions, please fire away! To get at the " real state " of his IgAN, I suggest you read his biopsy report. If you're anything like me, this will be rough going. However, it contains a wealth of information. There are certain red flags you can look for such as the presence of what are called " crescents " , which are consistent with a rapidly downhill course (this is rare) and the extent of scarring. You can also look at his lab values - particularly his creatinine. The extent of proteinuria is also important - but it really does not have much to do with the state of his kidneys. Welcome again to the group! Cy Hi to everyone > Hi, > > I just joined the group. I saw the support group in the website and > immediately joined. My son (9 yrs old) has just been diagnosed with > IgAN through biopsy. I'm meeting with his doctor tomorrow to get more > details on his present condition. with the preliminary result, the doctor > said, they are going to put him on a " drug " treatment(I think she said, > steroid). First through IV for 3 consecutive days about 2 hrs each time and > every other day to be taken orally. The next IV session will be after 2 > months and then the next one will be after 3 months. > > What will be good questions to asked to get his real state in IgAN ? Is > there a chance for IgAN to totally heal? > > Thanks a lot for having a group like this. I feel supported already. > > Regards, > > > _________________________________________________________________ > Let the advanced features & services of MSN Internet Software maximize your > online time. http://click.atdmt.com/AVE/go/onm00200363ave/direct/01/ > > > > 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 February 12, 2004 Report Share Posted February 12, 2004 Hi , A belated welcome to you to the group. I am just so sorry your son is having to cope with IgAN at his young age. I hope the steroid treatment brings his levels back to normal. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Hi , A belated welcome to you to the group. I am just so sorry your son is having to cope with IgAN at his young age. I hope the steroid treatment brings his levels back to normal. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Hi , Thank you for the welcome. I am so sad that my son has to go through it too and also for the rest of the people who has to go through it as well. Reading the correspondences from the support group makes me feel though that it is not fair that people has to go through that....but then I think that's part of this whole circle. It's nice to read emails from the support group because the strenght of this people are amazing and it makes me feel strong as well. More power to all affected by this sickness! >From: W4JC@... >Reply-To: iga-nephropathy >To: iga-nephropathy >Subject: Re: Hi to everyone >Date: Thu, 12 Feb 2004 12:08:00 EST >MIME-Version: 1.0 >X-Sender: W4JC@... >Received: from n26.grp.scd.yahoo.com ([66.218.66.82]) by >mc1-f35.hotmail.com with Microsoft SMTPSVC(5.0.2195.6824); Thu, 12 Feb 2004 >09:08:55 -0800 >Received: from [66.218.66.95] by n26.grp.scd.yahoo.com with NNFMP; 12 Feb >2004 17:08:09 -0000 >Received: (qmail 76040 invoked from network); 12 Feb 2004 17:08:06 -0000 >Received: from unknown (66.218.66.166) by m7.grp.scd.yahoo.com with QMQP; >12 Feb 2004 17:08:06 -0000 >Received: from unknown (HELO imo-r02.mx.aol.com) (152.163.225.98) by >mta5.grp.scd.yahoo.com with SMTP; 12 Feb 2004 17:08:06 -0000 >Received: from W4JC@... imo-r02.mx.aol.com (mail_out_v36_r4.12.) >id r.8d.331ebd9 (3964) for <iga-nephropathy >; Thu, 12 Feb >2004 12:08:00 -0500 (EST) >X-Message-Info: JGTYoYF78jH7lfCTZSA5PfjSoTGlB1kI >X-eGroups-Return: >sentto-2346229-24284-1076605687-cyncparas=hotmail.com@... >X-Apparently-To: iga-nephropathy >Message-ID: >X-Mailer: 8.0 for Windows sub 6800 >X-eGroups-Remote-IP: 152.163.225.98 >X-Yahoo-Profile: lauraw4him >Mailing-List: list iga-nephropathy ; contact >iga-nephropathy-owner >Delivered-To: mailing list iga-nephropathy >Precedence: bulk >List-Unsubscribe: <mailto:iga-nephropathy-unsubscribe > >Return-Path: >sentto-2346229-24284-1076605687-cyncparas=hotmail.com@... >X-OriginalArrivalTime: 12 Feb 2004 17:08:55.0517 (UTC) >FILETIME=[E587D0D0:01C3F18A] > >Hi , > >A belated welcome to you to the group. I am just so sorry your son >is >having to cope with IgAN at his young age. I hope the steroid treatment >brings his levels back to normal. > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.