Taper Time

Ada has tested trace to negative consistently for a week now, so we can begin the taper process again. Tomorrow we will begin 30 mg prednisone Every-Other-Day for 2 weeks. We are glad to be tapering again. Hopefully we can make it a little further in the process this time.

Holding off on taper process

Even though it has been a week since Ada responded to the increased medication she continues to have protein leaks up to a one, so we will maintain full dose until she can maintain one week of trace to negative protein leaks. I expect that should be within another week, or at least I hope so. In the mean time she is looking and feeling good and enjoying summer playing with friends.

Negative Again (that's a positive thing!)

Ada's proteins read negative today. So once she can maintain that (or trace) for a week then we will begin the taper process again to try and wean her off the prednisone. In the mean time, by restricting sodium, she has been able to lose a lot of the fluid she had built up. And her stomach is feeling much better. Yeah!

Yeah, responding again.

Ada was excited to report this morning that instead of a 4 her urine protein measured at 1. Hurrah, she is responding to the prednisone again. That is always my big fear is that the medicine will quit being effective for her. So we will hope things hold for the weekend. Then I will call the clinic on Monday for instructions.

I was asked if her stomach discomfort was due to the prednisone or other factors. I think mostly it is from the increased swelling. Her stomach is as firm as my pregnant belly, maybe even more, and that puts pressure on her stomach so she always feels like she has overeaten - but at the same time she always feels hungry. The stomach discomfort is more noticeable first thing in the morning, and later in the evening (I think being busy in the day keeps her mind off it).

If she doesn't take her prednisone with a good meal then she also has stomach discomfort; but I try and have her take it with lunch, eating something first, then spacing each pill out through the meal. Once the swelling is down if she continues to have stomach aches I will ask if we can split her dosage up so she takes half as much twice a day.

Again, Thank you for your prayers and fasting in her behalf.

Holding in there

Although Ada is still spilling lots of protein, at least the swelling is not increasing. She alternates between play and rest, depending on how she is feeling, usually related to how her stomach feels. At night she likes to sleep ont he couch upstairs near us because she gets naseated. When she gets up in the morning she seems to feel a little better.

So at this point we are holding steady, not getting better yet, but not getting worse either, and for that we are thankful.

On a side note:

The other day Ada was visiting a neighbor's garage sale. A shopper asked our neighbor if Ada had Nephrotic Syndrome. This woman explained that she had NS for 14 years as a child. She is now 30+, married, with 3 cute children. She said that for her the relapses tapered off about the time she hit puberty, and eventually went away all together. It was nice to see a success story and gives us good hope for Ada.

Consult with clinic

I talked to the Nurse Practitioner who is overseeing Ada's case at the University Hospital. Of course they are not happy to hear that she is swollen.

After trying to assess her over the phone (which is difficult to do) I was told that I could bring her down for an appointment to be seen, or I could continue to monitor the symptoms and keep in contact with the clinic. Since all they could really do at this point is take a urine sample, blood pressure, and look her over, I have decided to just monitor her here.

Ada is at the full dose of medication and we just need to give her body time to respond. In the past she has responded in about a weeks time. So hopefully she will respond again quickly, which should be by this weekend. But it can take longer, so we will just wait and see and keep an eye out for any dangerous sypmtoms (peritonitis or dermititis).

In the mean time the best thing we can do for her is keep her sodium as low as possible to control the swelling, and limit fluid intake. I worry about limiting fluid intake, but thankfully Dad just installed a swamp cooler, so that should keep her cool, and I have fruits like grapes and apples that can help quench her thirst.

She is still a pretty happy girl, but is lethargic for her and tends to spend a lot of time laying down now. She frequently asks to have her back rubbed and says it makes her stomach feel better. So reading books is a good activity for us, and I don't mind. Neither do the other kids. We are going through several books she wouldn't sit still for before, and many of their favorites. What better activity on a hot afternoon when it is too hot to go out and play anyway.

So that's pretty much where we are at. Wait and watch; pray that she will respond to the medication (the NP says they have some other tricks up their sleeves in case she becomes steroid dependent or non-responsive to the medication.)

Thanks so much for your prayers and caring about us. I will continue to post as we monitor her progress. Hopefully the protein leakage will stop as quickly as it started.

Our love to all,
Ada & family.

Relapse number 2

As you can see, Ada has completely relapsed.

The protein leakage started Sunday and increased rapidly. By Wednesday she was charting her proteins at 4+, as high as our test sticks monitor. She has also noticed that her urine is foamy - one symptom of leaking proteins.

There was no noticeable swelling until Thursday evening. I was looking at her stomach and ankles and thought she might be swelling again.

Friday morning she woke up with the "downs" look and I knew she was swelling. Because it is the holiday I called the nephrologist on call and they suggested we take her back up to full dosage of prednisone (which is only one level this time) and severely limit her sodium. Also limit her fluid intake as long as the swelling increases.

I will call the center on Monday to see what we want to do from there. I am assuming that we will watch for a time to see if she will respond to the stronger dose again. We are hoping and praying. In the mean time, she is pretty healthy and active, although she experiences some stomach discomfort from the swelling and will lay down for a bit when it gets bothersome.

Monitoring

Today her protein level was at a 4+. She also has been complaining about a mild stomach ache. At this point all we can really do is keep watching. I'm not sure if her stomach ache is linked to the kidney problem, or if it is from the amount of fresh fruit she has been enjoying.

Otherwise she looks and acts normal. She has not experienced swelling, which I contribute to her low consumption of sodium. I started making her bread again, and we just leave the salt off the meat. Using Mrs Dash has made that easier. And honestly, her pulled pork beats our wafer ham sandwiches :-)

We'll keep you posted.

Spilling protiens again

The other day Ada started spilling proteins again. Today and yesterday she was at a 3+ (the scale is negative, trace, 1,2,3,&4). She was just coming to the end of her month long treatment of 30 mg prednisone everyotherday and then we were to drop down. So I called the clinic and talked to her case manager.

The first question they always ask is if she has been sick and is she swelling.

She did have diarhea the other day, and is not swelling.

We are to hold her at her current prednisone level and just watch her for the remainder of the week (of course it is a holiday week). Then I will call the clinic back on Monday and we will evaluated any changes and see what to do at that point. Hopefully she is fighting a little stomach bug which is causing the problems.

Of course if she starts swelling or experiencing severe abdominal pain or fevers we are to call the on call physician at the children's hospital.

Keep her in your prayers please.