Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 Hi , I am so sorry you got back an Alports diagnosis for Rob. It sounds like there is a higher probability of Alports ending up in ESRD than with IgAN, and I am very sorry about that. I just seems hard to understand why he has to deal with both the Alports and ankylosing spondylitis. That just seems like too much for a 15 year old. My heart is just so heavy for both of you. Of course you are more than welcome to hang around here even though he does not have IgAN. We will do our best to support you and Rob regardless of what comes your way. The good news is that his creatinine, BUN, hearing and vision are normal. Let us just pray that it stays In a message dated 8/31/2004 1:45:11 PM Pacific Daylight Time, snooksmama@... writes: > I have been somewhat of a lurker here, I have only posted a few times. I > have a 15 year old who had gross hematuria starting May 2003. This > continued through November 2003 and then cleared up. He had 24 hour urine > test (slightly high calcium, the rest of the results were normal), normal > renal ultrasound, normal CT of the kidneys. When hematuria began again in > July and he had casts, crystals, and protein, a renal biopsy was > performed, August 6.yep > He was diagnosed, based on the biopsy results, with Alport's syndrome. > Alports is a genetic collagen disorder affecting the collagen in the > glomerular basement membrane, the ears and the eyes. In males, ESRD > typically occurs around age 40 or sooner, depending on how severe the > defect. Hearing and vision loss can also occur. Rob's hearing is NORMAL > right now (YEAH!), and he is pretty nearsighted, but vision is > correctable with glasses to 20/20. His BUN and creatinine are currently > normal, despite the appearance of his urine. (another YEAH!) > He is starting Cozaar to control his borderline high BP and this should > also help the proteinuria, per his nephrologist. > I will probably remain on this list, as Alports is fairly rare, affecting > only 1-2 people in 10,000. I haven't yet found an online support group, > but I am still searching (with a dinosaur computer that isn't cooperating > too well). > It had been thought he had IgA nephropathy because it does affect those > with ankylosing spondylitis, which he also has. However, the Alports is > unrelated to the AS. > I admire those on this list for their courage and support. You have been > a great support to me and my son. > , mom to , 15 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 I have been somewhat of a lurker here, I have only posted a few times. I have a 15 year old who had gross hematuria starting May 2003. This continued through November 2003 and then cleared up. He had 24 hour urine test (slightly high calcium, the rest of the results were normal), normal renal ultrasound, normal CT of the kidneys. When hematuria began again in July and he had casts, crystals, and protein, a renal biopsy was performed, August 6. He was diagnosed, based on the biopsy results, with Alport's syndrome. Alports is a genetic collagen disorder affecting the collagen in the glomerular basement membrane, the ears and the eyes. In males, ESRD typically occurs around age 40 or sooner, depending on how severe the defect. Hearing and vision loss can also occur. Rob's hearing is NORMAL right now (YEAH!), and he is pretty nearsighted, but vision is correctable with glasses to 20/20. His BUN and creatinine are currently normal, despite the appearance of his urine. (another YEAH!) He is starting Cozaar to control his borderline high BP and this should also help the proteinuria, per his nephrologist. I will probably remain on this list, as Alports is fairly rare, affecting only 1-2 people in 10,000. I haven't yet found an online support group, but I am still searching (with a dinosaur computer that isn't cooperating too well). It had been thought he had IgA nephropathy because it does affect those with ankylosing spondylitis, which he also has. However, the Alports is unrelated to the AS. I admire those on this list for their courage and support. You have been a great support to me and my son. , mom to , 15 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 I'm sorry to hear of 's diagnosis. You are more than welcome to stay with the group and please draw as much strength as you need from us to help you thru this, that's what we're here for. I hope he is one who can make it as long as possible before having to face ESRD. At least his outlook for a transplant is better than and IgAN patient...as we can have it recur in the transplanted kidney. I hope his sight and hearing stay as normal as possible. It's wonderful that he has normal creatinine levels and his hearing is still 100%. Hang in there and ask away with questions here. We will try our best to answer them or point you in the direction of answers. Amy 's diagnosis I have been somewhat of a lurker here, I have only posted a few times. I have a 15 year old who had gross hematuria starting May 2003. This continued through November 2003 and then cleared up. He had 24 hour urine test (slightly high calcium, the rest of the results were normal), normal renal ultrasound, normal CT of the kidneys. When hematuria began again in July and he had casts, crystals, and protein, a renal biopsy was performed, August 6. He was diagnosed, based on the biopsy results, with Alport's syndrome. Alports is a genetic collagen disorder affecting the collagen in the glomerular basement membrane, the ears and the eyes. In males, ESRD typically occurs around age 40 or sooner, depending on how severe the defect. Hearing and vision loss can also occur. Rob's hearing is NORMAL right now (YEAH!), and he is pretty nearsighted, but vision is correctable with glasses to 20/20. His BUN and creatinine are currently normal, despite the appearance of his urine. (another YEAH!) He is starting Cozaar to control his borderline high BP and this should also help the proteinuria, per his nephrologist. I will probably remain on this list, as Alports is fairly rare, affecting only 1-2 people in 10,000. I haven't yet found an online support group, but I am still searching (with a dinosaur computer that isn't cooperating too well). It had been thought he had IgA nephropathy because it does affect those with ankylosing spondylitis, which he also has. However, the Alports is unrelated to the AS. I admire those on this list for their courage and support. You have been a great support to me and my son. , mom to , 15 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Hi Sorry to hear about the diagnosis of Alports. You know, in terms of the chronic renal insufficiency (CRI), it really doesn't matter that much what kidney disease is the cause, so, by all means, I would stick around, as there is much in common. Pierre 's diagnosis I have been somewhat of a lurker here, I have only posted a few times. I have a 15 year old who had gross hematuria starting May 2003. This continued through November 2003 and then cleared up. He had 24 hour urine test (slightly high calcium, the rest of the results were normal), normal renal ultrasound, normal CT of the kidneys. When hematuria began again in July and he had casts, crystals, and protein, a renal biopsy was performed, August 6. He was diagnosed, based on the biopsy results, with Alport's syndrome. Alports is a genetic collagen disorder affecting the collagen in the glomerular basement membrane, the ears and the eyes. In males, ESRD typically occurs around age 40 or sooner, depending on how severe the defect. Hearing and vision loss can also occur. Rob's hearing is NORMAL right now (YEAH!), and he is pretty nearsighted, but vision is correctable with glasses to 20/20. His BUN and creatinine are currently normal, despite the appearance of his urine. (another YEAH!) He is starting Cozaar to control his borderline high BP and this should also help the proteinuria, per his nephrologist. I will probably remain on this list, as Alports is fairly rare, affecting only 1-2 people in 10,000. I haven't yet found an online support group, but I am still searching (with a dinosaur computer that isn't cooperating too well). It had been thought he had IgA nephropathy because it does affect those with ankylosing spondylitis, which he also has. However, the Alports is unrelated to the AS. I admire those on this list for their courage and support. You have been a great support to me and my son. , mom to , 15 Quote Link to comment Share on other sites More sharing options...
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