One Mom's Plea: Yearly Urine Test for Youngsters

by Debbie Weinstein

On January 21, 2002, my daughter went for her five year checkup. My husband and I anticipated that at worst she would get her routine shots and cry for a few minutes. We look forward to our kids' yearly checkups. We like our pediatrician and enjoy hearing how are kids are doing developmentally and getting our "official" weight and height check.

As we were getting up to leave the visit, the nurse casually said to us there seems to be some protein in your daughter's urine, why don't you have her pee in a cup tomorrow morning and bring it in.

We left and barely gave it a second thought. She is a beautiful healthy five year old who, other than a few colds, has rarely been sick.

When we returned the next day, they put the dipstick in her urine and the nurse told me it was plus two. I said "is that good or bad?" I knew nothing! She told me normal was zero and dangerous was four. To me that did not sound good.

This began our very unusual and highly stressful journey into the world of kidney disease.

During the entire time and to date, Perri has had no symptoms. Other than the urine test we would not had known anything.

The next day we went for blood tests and did a 12 hour urine collection test to check for orthostatic proteinuria. The blood tests were fine and it was not orthostatic. I talked to the pediatrician and she said we could either monitor it or see a specialist.

I am a Jewish mother, I do not monitor anything. I said let's go see the specialist ASAP.
We called the specialist whose receptionist told me there would be a six week wait. I said..."but this is an emergency" she told me to dial 911 if it was a real emergency and that the nephrologist would see me in six weeks.

I called my mother and said you know a lot of people, do whatever it takes to get me an appointment. My phone rang a few hours later and we went to see the doctor the following week.

We began discussing with the pediatric nephrologist what to do. He took us through our options and we agreed to perform several more urine tests and an ultra sound.
The ultrasound came back normal and the protein was still there. We began to discuss the option of a biopsy.

During this entire time everyone told us "It couldn't be serious kidney disease, she has no symptoms...she does not fit the profile...the protein was picked up during a screening test...she looks great....I am sure that it will be fine."

Well, it was not fine.
On March 27 we performed the biopsy. The actual procedure, while not pleasant, was not as traumatic as we feared it would be for Perri. She was a real trooper. The results however where devastating.

The biopsy was highly suggestive of FSGS but inconclusive. They looked at 29 glomeruli, two were globally sclerosed, and one had evidence of perihilar hyalinosis.

It turned out that we knew the pathologist at Columbia who performed the pathology. We spoke with him at length and learned that hours were spent discussing Perri's case and no one was quite sure. They believed that it was FSGS. My brother-in-law is a doctor at the NIH. One of his friends and coworkers is studying FSGS so the tests were sent there and the pathology was performed again. They believe it is FSGS but they are not sure. Perri's
doctor believes it is FSGS but he is not sure. They also believe that it could be what is referred to as a "wastebasket disease" a variation of FSGS that is similar but a little different in the clinical diagnosis.

My husband uses the analogy of the O. J. Simpson case. Many people believe he was guilty but the evidence could just could not convict him.

We were given the choice of doing nothing (not an option for us), beginning steroids or trying the ACE inhibitors. Perri started the ACE inhibitors four weeks ago and there has been no change. Her protein remains just below the nephrotic range. We are going to wait two weeks, test again and then move on to another type of drug similar to the ACE inhibitors.

My family feels blessed that it is not definitely FSGS, but after almost 5 months have come to realize that it does not really matter. For now we call it "Perri's disease". It still needs to be treated, the treatment is not working and it is a challenge to decide what to do next.

No one can tell us what her long term prognosis is because there are no studies of kids with FSGS who present with no symptoms. Logic tells us that because Perri was diagnosed early her prognosis should be a little more optimistic than some FSGS kids. But from what I am beginning to learn, kidney disease has very little logic.

Perri knows very little about what she is going through and what she may someday be faced with. She knows she goes to the doctor a lot, pees in a cup a lot and is really sick of getting blood tests.

Some days she acts out and we wonder, does she feel OK, is it the medicine, is it the stress that my husband and I are experiencing, or is she just acting like a 5 year old?

Please encourage any of your friends, neighbors and relatives to request a routine urine test for their children during their yearly physicals. It was the way we learned of our daughter's problem so early. Hopefully this early diagnosis this will give Perri the best chance of being cured!

If anyone would like to speak to us about our experiences or theirs, please email us at frogkerm@aol.com.