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My son has gross hematuria and protein in his urine

Sent to Health Experts June 22, 2006 11:25 p.m.

My son has gross hematuria and protein in his urine since he has been 3 years old. We go to a pediatric nephrologist every six months. The blood is always at high levels but the protein flucuates. The nephrologist has said maybe a biopsy could be possibe, but the protein levels would have to be consistently high enough to warrant that. His doctors has said that he could have IGA Nephropothy but couldn't truly diagnos it without doing a biopsy. Recently, it has come to light through family history that he could perhaps have alport syndrome. He has all the symptoms and now I found out that my nephew (my sister's son) is having the same issues. He is 5. My father was suppose to have a biopsy, but his kidneys are not in good shape, so he can't. Should I get a second opinion for my son's condition. I am nervous that just waiting every six months to see what is happening is causing irreversible damage to my son's kidneys. If I should get a second opinion, how do I go about doing that?

Customer (name blocked for privacy)

Status: Closed Value: $15

Answer
June 22, 2006 11:45 p.m. (19 minutes and 35 seconds later)

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Dear Customer (name blocked for privacy),

I would definitely ask for a second opinion. It doesn't sound like your son's nephrologist is being very aggressive. IgA nephropathy can run in families and it does cause high levels of protein in the urine due to the kidneys inability to adequately filter out the protein. Alport syndrome also can run in families, but it's difficult to diagnose without biopsy. Vision and hearing problems usually occur with alport syndrome. With either one of the possibilities your doctor has given you (alport or IgA nephropathy) chronic renal failure can develop.

I would not be comfortable with this current "every six months" checkups either. You can start by talking with his pediatrician to get a referral to another nephrologist. But I definitely believe you're right in wanting that second opinion.

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