Guest guest Posted September 4, 1999 Report Share Posted September 4, 1999 >I just read in one of your posts that your daughters loss my be related to >kidney....what type of kidney problem does she have....my son is currently >going through the process of kidney testing....doctors are betting on Alport's. >Any information or insight you could offer in dealing with kidney problems >would be much appriciated. >~ and 's Mom They think Alport's but my understanding was they can't tell for sure without an biopsy so it could be two other kinds as well. I have elected not to do a biopsy because 1) Petya has been through enough already, 2) she is not having any kidney dysfunction at this point, we simply monitor 3) if we knew for sure it would make no difference on what we would do. So I have decided that to know would only be to satisfy my curiosity at this point and it is not necessary to put her through the ordeal. What kind of testing are you doing now? Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 1999 Report Share Posted September 5, 1999 Barb It was my understanding that females very rarely sufffered form Alport Syndrome and were only carriers. Aparently this is not he case? ~ and 's Mom At 04:21 PM 9/4/99 -0400, you wrote: > > > >>I just read in one of your posts that your daughters loss my be related to >>kidney....what type of kidney problem does she have....my son is currently >>going through the process of kidney testing....doctors are betting on >Alport's. >>Any information or insight you could offer in dealing with kidney problems >>would be much appriciated. >>~ and 's Mom > > >They think Alport's but my understanding was they can't tell for sure >without an biopsy so it could be two other kinds as well. I have elected >not to do a biopsy because 1) Petya has been through enough already, 2) she >is not having any kidney dysfunction at this point, we simply monitor 3) if >we knew for sure it would make no difference on what we would do. So I have >decided that to know would only be to satisfy my curiosity at this point and >it is not necessary to put her through the ordeal. > >What kind of testing are you doing now? > >Barb > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 1999 Report Share Posted September 5, 1999 >Barb >It was my understanding that females very rarely sufffered form Alport >Syndrome and were only carriers. >Aparently this is not he case? >~ and 's Mom Yes, more rare but possible. Also if females do have it then the disease is usually much less severe. Problems with it start later in life and don't cause as many problems. That is why we are on monitoring only to check kidney function every year now. When kidney problems were first discovered we were monitoring every three months, then twice yearly and now only yearly. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 1999 Report Share Posted September 6, 1999 Hi Barb Just re-read your post and realized I did not answer your question about testing...so far they have gone over his complete urinary bladder system to be certain the problem is kidney....that was a million scans and tests as well as a test called flow rate...next we prceeded to a DMSA which is done through nuclear medicine...I understand similar to a renal scan..they inject radio active dye and then take a zillion pics of the kidneys (72 pics to be exact) during this one hour process you must be completely still...any time you move at all even your arms the pic has to be re-done...test took aprox. 1 hour. No we are doing many many urine and blood tests....We see the nephrologist again in October. They explained that often they can trace Alport through family history as it is genetic, but is the first born boy on my side since before my grandmother....not much history to go on....our understanding is that once everything else is ruled out they will do I believe a kidney biopsy to make a final call. We were first tipped off by blood in his urine....that has been going on for two years when I finally pushed for it to be looked into further (after 6 clear ultrasounds) was about the same time we were finding out about his hearing loss....is was only through another list serve that I realized there may be a connection...it was at that same time the hearing specialist was recommending us to Urology and Nephrology. Wow that was a long answer! Hope this is the type of info you were looking for! Take Care ~ and 's Mom > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 1999 Report Share Posted September 7, 1999 >No we are doing many many urine and blood tests....We see the nephrologist >again in October. They explained that often they can trace Alport through >family history as it is genetic, but is the first born boy on my >side since before my grandmother....not much history to go on....our >understanding is that once everything else is ruled out they will do I >believe a kidney biopsy to make a final call. >We were first tipped off by blood in his urine....that has been going on for >two years when I finally pushed for it to be looked into further (after 6 >clear ultrasounds) was about the same time we were finding out about his >hearing loss....is was only through another list serve that I realized there >may be a connection...it was at that same time the hearing specialist was >recommending us to Urology and Nephrology. >Wow that was a long answer! Hope this is the type of info you were looking >for! >Take Care >~ and 's Mom >> That is how we found out about Petya's kidney disease, from blood in the urine. She is adopted so we have no genetic connection to make either. I know how hard it is to go through all of the tests. The one that scared me the most was when they were looking for lupus. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 1999 Report Share Posted September 7, 1999 Why lupas? How do they test for this? ~ and 's Mom > >I know how hard it is to go through all of the tests. The one that scared >me the most was when they were looking for lupus. > >Barb > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 1999 Report Share Posted September 7, 1999 >Why lupas? How do they test for this? >~ and 's Mom >> >>I know how hard it is to go through all of the tests. The one that scared >>me the most was when they were looking for lupus. This was several years ago but I think because of the blood in the urine. I think it was just one of the things they rule out before they start looking at the kidney disease. I don't recall the name of the test they use but I think it had something to do with DNA and arthritis. Barb Quote Link to comment Share on other sites More sharing options...
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