Guest guest Posted December 13, 2000 Report Share Posted December 13, 2000 Hi Pam. We have some members here who are parents of children with IgAN, and I'm sure you can get a lot of help and information. What I would suggest is that you read some of the past messages on the eGroups site, and look at some of the files that are provided for reference and general information. That will probably answer some of the questions you might have. There are a lot of questions answered in those back messages -- I plan to put together an FAQ about IgAN, but it's going to take some time and work (already starting gathering the material). It might be useful if you could give us a starting point to help you, like for example, how your son was diagnosed. For example, was it from a routine urine analysis, or from an episode of acute glomerulonephritis, and also is he in nephrotic range or not? What has the doctor told you so far, and was he diagnosed by biopsy? In my case, and you can read about it in the Files section, in the " Personal Stories " folder, I was 23 when the symptoms first were found during a routine medical, and I'm 47 now, and still not on dialysis. Mine is the classic, slowly progressing type of IgAN, but not everyone is the same. Pierre (unknown) > Hi, my son was diagnosed with IgAN on Monday. He's 16 and we (his parents) > want to learn everything about this disease. Can you help us. I would like > to know how you all are doing, when you were diagnosed etc. We live in > Houston. Thanks Pam > ____________________________________________________________________________ _________ > Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com > > > eGroups Sponsor > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2000 Report Share Posted December 13, 2000 Hi, Pierre. I have read alot of the messages so far and am learning alot. First, where can I find the files section? My son woke up the day after Thanksgiving this year saying he was very nauseous and tired with a slight fevor-100. He is 16 He slept all day and night. The next morning, he said he felt fine, but his urine was tea colored. It progressed rapidly to very red and then to lemonade color. We took him to the emergency room as it was Saturday. They took a Cat Scan of his kidneys, and low abdomen. Both were unremarkable. His white count was not elevated. He had no pain or discomfort. They called in a nephrologist, and he mentionned IgA and said the only way to be sure was thru biopsy. He had the biopsy that Monday, two weeks ago. His urine was very foamy last week, but that now has gone. We were told this past Monday that he had not only IgA but another benign kidney disease, something called thin basement membrane disease apparently inherited from his father, as he has microsopic blood in his urine too. We took to a pediatric nephrologist at the University of Texas Medical School Hermann Hospital here in Houston. He told us that his protein has dropped down now to the normal range. He has him on 20 mg of an ACE inhibitor for blood pressure control. We will revisit him in one month with a 24-hour urine specimen. In the hospital his protein was 2.5 grams, but BUN and creatinine were normal. One thing that really bothers me is that I allowed him to take allergy shots for the past year because of bad allergies. That causes your immune sytem to produce certain antigens. Immunoglobulin A is an antigen! I asked the doctor whether those shots caused this. He said probably not,but it was possible that they may have tipped the scales. Our hope is that this disease in can be managed and he can live a long healthy life. Thanks for listening. Pam > >Reply-To: iga-nephropathyegroups >To: <iga-nephropathyegroups> >Subject: Re: For Pam was (unknown) >Date: Wed, 13 Dec 2000 13:15:09 -0500 > >Hi Pam. We have some members here who are parents of children with IgAN, >and >I'm sure you can get a lot of help and information. What I would suggest is >that you read some of the past messages on the eGroups site, and look at >some of the files that are provided for reference and general information. >That will probably answer some of the questions you might have. There are a >lot of questions answered in those back messages -- I plan to put together >an FAQ about IgAN, but it's going to take some time and work (already >starting gathering the material). It might be useful if you could give us a >starting point to help you, like for example, how your son was diagnosed. >For example, was it from a routine urine analysis, or from an episode of >acute glomerulonephritis, and also is he in nephrotic range or not? What >has >the doctor told you so far, and was he diagnosed by biopsy? In my case, and >you can read about it in the Files section, in the " Personal Stories " >folder, I was 23 when the symptoms first were found during a routine >medical, and I'm 47 now, and still not on dialysis. Mine is the classic, >slowly progressing type of IgAN, but not everyone is the same. > >Pierre > > (unknown) > > > > Hi, my son was diagnosed with IgAN on Monday. He's 16 and we (his >parents) > > want to learn everything about this disease. Can you help us. I would >like > > to know how you all are doing, when you were diagnosed etc. We live in > > Houston. Thanks Pam > > >____________________________________________________________________________ >_________ > > Get more from the Web. FREE MSN Explorer download : >http://explorer.msn.com > > > > > > eGroups Sponsor > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2000 Report Share Posted December 14, 2000 Hi Pam. For the File section, just go to the group web page: /group/iga-nephropathy You'll see the word " Files " along the left side of the page. Just click on that and it will take you to the files section. Once there, you can browse in them all you like. It sounds like your son started off with the classic tea-coloured urine. The nephrologist was right that the only sure way to diagnose IgA-type glomerulonephritis is by biopsy. Your son seems to have had an acute glomerulonephritis, which seems to have settled down, and it will probably now just become a chronic condition, hopefully a mild one. Sometimes it can go into remission too. Foamy urine is usually a sign of proteinuria (urine in protein). The fact that your doctor says his protein has dropped to normal and that the urine isn't foamy anymore is a pretty good sign. He could have gone into what we call " nephrotic syndrome " , which is a more serious consequence of any glomerulonephritis, and which requires specific treatment to bring the proteinuria down, but it looks like that didn't happen. So it looks like things are under control, and his nephrologist is doing the standard things -- mainly the ACE inhibitor. This helps to keep the proteinuria down, and seems to lessen the inflammation in the glomeruli. It doesn't matter if your son does or doesn't actually have high blood pressure in terms of taking the ACE inhibitor. But if he does have high blood pressure, it has to kept at a normal level, with the appropriate dose of ACE inhibitor plus a diuretic or other drug if necessary. As for any other treatments, well, nephrologists generally aren't stupid. They know about the tonsillectomies, low protein diets, prednisone and everything else, the same as we do. If they don't mention any of these things, it's a safe bet that it's because the biopsy, lab results and other symptoms are such that these things aren't indicated. For example, there isn't much point in restricting a kid's protein intake if the BUN is normal. You may here lots of ideas about dietary restrictions, and this and that. These things aren't necessary or helpful unless certain conditions are present. People often get confused between things that are necessary when patients are in actual end-stage renal failure, and they falsely assume that if they adopt similar dietary restrictions, it will help with the chronic kidney disease. This just isn't the case. The only real exception is protein, and even that is debatable with IgAN specifically (but I could write a whole other message about that.) Interesting that you should mention the allergy shots. I have bad allergies too. I've had hay fever type allergies for 40 years. When I was younger, I refused allergy shot treatment because I didn't think it was worth the trouble. Last year, I started to develop some mild asthma symptoms, and my family doctor decided to refer me to an allergist. The allergy tests confirmed that I still had all the same allergies I had when tested as a teenager (tree, grass and ragweed pollens, house dust, dust mites, cats, horses, tobacco etc.). Now the interesting part. The allergist said that normally, he would recommend allergy shots to treat this, so I wouldn't have to depend on antihistamines, but that in my case, because of the IgA nephropathy, he wouldn't do it. He said it wasn't wise to mess around with the immune system in a case like that. On the other hand, it's really just a precaution. There is no science to back it up, really. IgA stands for immunoglobulin A, and it is an antibody. But IgA isn't really involved all that much with allergies. It's more concerned with infections. IgE is the main allergy antibody. But with antibodies, our knowledge of them is incomplete, so who knows? As for the thin membrane disease, I'm not really knowledgeable about that, but I do know that it doesn't usually lead to kidney failure. I also know that it isn't a definitive diagnosis in children, but that there is an association with IgAN. Here's a quote which pretty much sums it up: " TBMD may arise with other glomerular diseases, most frequently IgA nephropathy, and it remains to be established whether these cases are a casual occurrence or whether a thinner than normal GBM predisposes to immune complex deposition. " I hope continues to improve and does well. He seems to be on that path already. Pierre (unknown) > > > > > > > Hi, my son was diagnosed with IgAN on Monday. He's 16 and we (his > >parents) > > > want to learn everything about this disease. Can you help us. I would > >like > > > to know how you all are doing, when you were diagnosed etc. We live in > > > Houston. Thanks Pam > > > > >___________________________________________________________________________ _ > >_________ > > > Get more from the Web. FREE MSN Explorer download : > >http://explorer.msn.com > > > > > > > > > eGroups Sponsor > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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