Update

The adventure continues. . .

We were sailing through things pretty good. She weened off the prenesone and was protein free again. We were now testing weekly and I was glad because we were headed to a weeklong woodbadge and family camp and I didn't want to mess with pee sticks and dietary concerns.

So what happened :-)

A couple week before we headed to camp she swelled up like the pillsbury dough boy. A protein test showed she was up at a 3+. We tracked it for a week and called before the weekend hit. Back on prednisone. I was worried she wasn't going to come down because it was taking so long, but she did, and with severe sodium restrictions the swelling went away.

So - now what to do about camp? We packed up her meds, plenty of fresh fruits and low sodium snacks, got a copy of the camp menu so we knew ahead of time where restrictions were needed, and took off to the camp.

As far as diet was concerned, since the swelling was gone I just had her use prudence and not gorge herself on chips and hot dogs - had her load up on the fruits and veggies instead, but gave her permission to enjoy what was offered.

As far as activity was concerned - it didn't slow her down a bit. She went hiking and sailing, she played games and made crafts. She made new friends and had a wonderful time.

NS is a pain - well, actually there isn't a lot of pain involved as long as we are on top of the edema, so it's more of a nuisance, and we are still hoping remission will return, but in the mean time life is going on and she is a very happy, well adjusted child.

Although we have not finished the weaning process her proteins have begun to elevate again. The are holding at a 2+, which makes me suspect that when she weans off she will fully relapse. But for now we are not increasing the med and are just watching to see what happens.

Lots of prayers and love and fasting are appreciated. They keep assuring us that eventually this will go away on its own, and until then we just need to manage it. So we will keep managing. I'll see if I can get a couple of pictures of her posted so you can see just what an active happy child she is 4 years later.

well - it's been a while. Ada went a year and a half without any problems, then last summer she had a relapse. She did a run of prednisone and was OK for another 4 months. At the first of the year she did another course of prednisone, but shortly after she went off she has relapsed again.

She is going back on prednisone, a higher dose this time, with a quicker taper. We'll cross our fingers that it will hold for a while so we don't have to talk about more of the intense auto-immune drugs.

One other thing - she has not had any illness to trigger this, but she is congested from allergies. We are going to aggressively treat her allergies and see if that will help keep her from relapsing again.

Official Relapse

After over a year and a half we now have an official relapse.

At the end of June her proteins spiked, but they came back down on their own, which is great. But early July they went back up again and have stabilized at a 3 now for a couple of weeks.

Due to a new baby coming and an unexpected family funeral, I had postponed notifying the clinic, hoping she would resolve on her own. She was not swelling, or sick, and I took her to the Dr for a blood pressure check and it was good, so I continued to put off calling. But today I decided I needed to notify the clinic and find out where we go from here.

Her nurse, Debbie, was very understanding. We talked about where we are at, how things have gone, and then determined that the best thing to do at this point is to put her back on the prednisone, using a relapse schedule, and we would schedule an in-clinic appointment after things have settled down a little around here after the new baby comes (hopefully this week).

So, back on the "icky medicine". Glad she can swallow the pills instead of having the liquid.

Keep hands and feet inside the ride at all times

Looks like Ada is back on the ride. A month ago she was looking 'funny' so I had her do a test (she has been clear for so long that we were testing about every other week or so, especially since I was running out of test strips). She tested at a 4.

It was going into the weekend so we just ordered new strips, limited the salts, and watched her. After a couple of days the numbers started going down and by the new week she was at a 1 or 2, so I decided to take a 'watch and see' approach. By the end of the week she was consistently trace, and even had a couple of negatives.

For the next while she was

No change - still watching

The other day Morg wondered if Ada was puffing up, her eyes looked a little funny. So we did a dip stick test (I'm almost out of those guys again). Trace. She looks good today and her sticks still say trace. trace is good. Happy active child. A little short, but that could be genetics as much as the prednisone.

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.