Update

So Ada is back in auto-pilot.

After a couple days of 1 or 2 she shot up to a 3+ for a couple of days. But I also noticed her urine was very dark, brownish. I didn't know if that was her being dehydrated (has she been drinking much lately - I haven't a clue) or were more serious things going on?

So after consulting with our family Dr we decided to push fluids (nothing drastic, just making sure she was getting a reasonable amount of fluids) and see what happened.

The next day her urine was light colored, pale yellow, and her protein back down to trace. We were able to continue the same pattern for a couple of days.

So she is definitely spilling some proteins - but only a trace, which is unconcerning to the nephrology clinic. But we have learned that if she gets dehydrated the proteins will become more concentrated in her urine. Likewise, if she drinks more water they will be diluted. But as long as she is drinking a reasonable amount of water that should give us our best indication of how she is doing.

So do I know what is going on - not really. I hope it will clear up completely in time. But at least for now she is able to go about normal activity and we continue to know what to watch for.

Ha Ha Jokes on me

So, of course, Ada did a pee check last night after I responded to a comment the other day from someone asking how many times Ada had relapsed since her cytoxan and the stick was dark, a 3+. I decided not to panic, she has been running trace with an occasional 1 and the clinic said she was fine as long as she didn't stay at a 1 or 2 too long or spike to a 3/4.

So we checked again this morning and she was still a 3+, pushing a 4. So back on the low sodium kick while we wait and watch. Won't be too big of an adjustment as we maintained a lot of the habits from before - will just miss the convenience of store bought breads.

Hopefully her body will self correct. If not, I guess she will have to go back on a prednisone treatment. Fortunately most of her friends have responded much better to the prednisone after their cytoxan treatment and so that bodes well for Ada.

And I thought/hoped we were done for good. We'll see.

Good News

Talk to the clinic (well, left phone messages back and forth). The good new is that as far as they are concerned trace is as good as negative, so as long as her 1s are occasional and she doesn't spike above a 2 then we can just keep an eye on her. No swelling or any other problems. I'm glad we don't have to worry about prednesone or anything else like that. So on with a normal life, knock on wood.

Who knows??

So Ada continues to test trace, 1, trace, more than 1 but not 2, trace, nothing high, but not negative either. I meant to call the clinic, but we just kept going and I never got a few minutes with the phone. Do I worry, or just keep an eye out? Hopefully I can get ahold of the clinic next week.

Steady as she goes

Pee tests are getting old. She is stuck at trace, with an occational day or two bump up to a 1+, but never a negative. So what does that mean? I don't know. I guess I ought to call the nephrotic center and see if that is acceptable, or if we should be trying to get her down to neg. Otherwise, she is a happy healthy girl, looking forward to her first dance review and a normal Thanksgiving dinner.

Woo Hoo

2 consecutive days of trace. We're on the right path. Fingers crossed, moving forward. Yay!

Wobbly, with hope

So we are testing daily. Some days the stick is a little lighter, almost yellow (trace) and we cheer and hope. But the next day the stick is that ominous green (1+) and we sigh, "Oh, well. At least it isn't blue (4+)."

Anyway, Life is good. She isn't swelling, hasn't been sick, and continues to bounce around with enthusiasm for life.

Contacted Pediatric Kidney Center

Well, after 2 weeks of leaking proteins we contacted our nurse at the Nephrotic Center. Gave her the run-down. Leaking kidneys at 1+ for at least 2 weeks, no illnesses, no swelling, otherwise healthy.

At this point there isn't really anything to worry about, just wait and watch. I can do that.

Heard another little friend had also relapsed recently after having the summer med free (who had also done the cytoxan treatment) fortunately she responded quickly to treatment and is doing well.

We keep all of our little NS friends in our hearts and prayers.

Make a guess

Still not sure if it is trace or 1+ (30); So that's good news because it is looking lighter than a couple days ago. Maybe she can beat this on her own this time. Hugs all around.

Dayna

Looking Hopeful

Reading those albustix (pee sticks) can be a little tricky. It's usually pretty clear if you are off either end (neg or 2000+), but in the middle it is open to interpretation.

When reading the sticks I will think, "Well, it looks darker than trace, but it definitely isn't 300, so even though it isn't a perfect match it must be 30" I find myself trying to decide between two levels and just make a best estimate.

So for the last week I have known that she isn't at 300, but it didn't quite match 30 either. The last two days it was more a matter of, "It doesn't quite match 30, and it isn't quite trace either, but it definitely isn't 300."

So we appear to be headed in the right direction, that the amount of protein spillage is going down. Fingers crossed and prayers being said. Thanks for everyone's support.

Forgot to Knock on Wood

Right after I posted the last update, celebrating a year without meds or protein, A random urine test indicated a slight rise in proteins.

Over the last year checks varied between neg and trace, normal for most people. So instead of daily checks we were able to just do occasional tests, usually every other week or so.

This last week the test came back slightly elevated. Not enough to push a panic button, but enough that we are watching daily for a spike, or hopefully, for a return to normal. (the scale is exponential, so even though we are elevated, we are a long way from where she has been)

We enjoyed our hiatus and hoped that there would not be a relapse. Perhaps it won't be anything to worry about. Ada has not been sick, or suffering from allergies, so this is a little perplexing that the proteins have returned.

Current plan of attack, continue to monitor daily for another week or so watching for elevation in proteins and/or swelling (currently there is no edema). If a spike occurs, or if the elevated levels do not return to normal we will contact the Nephrotic Center for further instructions.

Happy testing :-)

1 year anniversary

Ada has gone 1 year without any medication or protein spillage. This is great news for her and for us. The flu has hit our house, but so far she hasn't been affected by it. We'll keep checking proteins, but hopefully even if she gets sick it won't knock her kidneys off kilter and she can continue her progress.

Our best wishes to those who are still battling each day.

Can't keep 'em down

Just thought I would post an update.

To date Ada has not relapsed since she finished her cytoxan course in October. She has lost all retained fluid and does not spill proteins (we still test about every other week and during illness).

Her level of activity is as high as it ever was, but not as spastic as she was on prednisone.

Just for proof of how little her life is affected, this was her last week on a family outing.She was determined to make it to the top, and she did - barefoot and all. (Maybe she was right at home in the harness, since she spent her first 6 months of life in a harness due to a congenital hip disorder) Life is good.

Latest Nephrologist Visit

We saw the Nephrologist and his team last week. Ada bounced in and was in a room before I finished filling out the paperwork again. Her Nurse Practitioner came in and interviewed her, Ada gave her a picture she had drawn, and chatted.

The nephrologist came in and was happy to hear that she has been off all meds for 6 mo. without a relapse. He said hopefully this is over but, not to be disappointed if we do have a relapse. The good news is that if we relapse she should respond better to the steroid treatment than she did before.

So Sorry this site has gotten boring. But we are glad. Hopefully if you are here because you are facing nephrotic syndrome you won't be too far away from finding life boring again also.

Cruise Control

It's hard to believe, but in a couple of weeks we will reach our 6 month mark. 6 months since she went off cytoxan, 6 months since she has taken any prednisone, and 6 months without her kidneys spilling proteins. All this in spite of colds and allergies (the usual suspected triggers.) We have much to be greatful for.

Cold passes without incident

Navigated a cold without relapse. Yeah!

Boring is Good

Thanks for dropping in and checking on us. Ada is doing her pee tests once a week, more or less. We sometimes forget in the morning and then don't get around to it until the next day or two. We maintain a lower sodium menu, but not anything like when she was leaking proteins. She is now almost 3 months protein free without the aid of any medication, and the longer she is in remission the less chance she will relapse, which makes her site a little boring - sorry. But sometimes boring is good.

Does that mean life around here is boring? No Way, not with Ada. She doesn't need prednisone to make her active. She was always one of the kids who got wound up on cold medicine rather than falling asleep. She is having a great time learning and improving her reading and writing. She is a great little scientist, and with the new microscope we got she can now check out her own cells (cool huh)

So with this new year we are hoping for the best for everyone out there. If you are currently on prednisone, we hope you successfully ween off. If you are on a more intensive therapy, we hope it is successful and you will soon be protein and prednisone free. If you are looking at a biopsy, we hope you find the answers you need. And if you are currently in remission, we hope you stay in remission for a long, long time. And if things just are not going well at all, we wish you the strength and courage to carry you through to better times and pray your Drs will be guided to give you the proper care you need.

Love from Ada and a Happy 2009. If all goes well you probably won't get another post here for another month. Thanks for dropping in and checking up on us.

2 months free and still counting

Today marks 2 months being prednisone and protien free. The cytoxan is doing its job.

That first picture is from her last relapse in Aug. The other is her current school pic from Nov. She is certainly doing well. Thank you for all the extra prayers in her behalf. Hopefully she won't relapse, but we'll keep you posted either way.

Mark One Month

Today makes a full month that Ada has been protein free without the aid of prednisone or other medications.

Sending our heart felt prayers to those who are in the middle of a relapse.

Kidneys Holding

In spite of the 'flu' yesterday Ada's kidneys are holding in there and protein is at trace. That's a good sign. Thanks for prayers.

In all honesty, we expect there will be an occational relaps, but statistically she should respond better to the prednisone now that she has had a cytoxan course. But it would be great if she never had to deal with this again.

For now our instructions are to test for protein once a week, daily if she is spilling proteins, swelling, or sick. But even then we don't need to worry unless she goes beyond a week with higher protein levels.