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.