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.

Visit w/ Nephrologist.

Ada's visit went well. As long as she is responding to the prednisone without suffering from side effects they will continue with the current course of medication, even if she is dependent on it. If she stops tolerating the prednisone or quits growing then they will look at switching course of medicine, most likely to Cyclosporine (or Cytoxin?) for a short course to see if that will work. But at this point, so far so good.

They did ask if she was always so smiley and giggly and hyper, or if the prednisone was having a big impact on her personality. I had to confess that she has always been a whirlwind, but her moods are just a little more intense on the prednisone. Also her eating needs to be watched from time to time, but due to her energy level we don't need to restrict calorie intake much.

Included here is a picture of her just being a normal child on a family outing. Although we are dealing with protein tests, medications, and dietary precautions; there is still plenty of room to just be a normal child.

Tapering Again

Ada's proteins held at trace to negative for a week, so we have begun the taper again. She is now taking 30 mg prednisone every other day. We identify days as "Prednisone days" and "Non-Prednisone days". I don't do this because they are "good days" and "bad days" but because I can check the log and tell Ada what kind of day it is, then she can remind me at lunch time if she has to take prednisone with her lunch. (I am such a space case these days that it is good she can be responsible too)

Positive response to medication

Ada's proteins are holding at trace or negative. That is good. She is doing well and very happy, with plenty of energy to burn. She has been complaining of stomach aches in the evening and I have wondered if this could be a sensitivity to the prednisone. I will have to ask the Dr when we see him again. She did not swell at all that I noticed this time, thank goodness for our little protein test strips. I am glad that the relapse cannot sneak up on us over and over again. Always greatful for little miracles.

Yeah, proteins dropped today

Ada's proteins were recording at a 4 since she spiked. Today they dropped to a 1 (I did the test, so I know it is accurate). So if that holds then we know she is responding to the medication again. If we can get her down to trace/neg for a week then we can begin the taper schedule again. She won't need to stay and the high prednisone dose like she did the first time.

Thanks for prayers and support.

:-( First Real Relapse

Well, Ada has relapsed. But at least with the urine tests we are able to know much sooner and begin treatment before she is all swollen up.

So, we go back to a full prednisone dose until she can be trace/negative for a week, then begin the taper schedule again. If at first you don't succeed - try, try again.

Interesting to note: On Wed, when we were suppose to call if her protein output wasn't down, she came into my room excited to report a negative urine test. It was our hope, but also sounded too good to be true. After some questioning we found that since she couldn't find a pee cup she just dipped into the toilet bowl after she went potty. Got great results, but not accurate.

Holding through Wed

Ada continues to spill proteins without reason (cold, flu, illness). Monday the Nephrologist said to just hold her medication level. They would really like to give her body a chance to respond on it's own without increasing her steroid dosage. So I am to give them a call on Wed and see if they want to give a little more time or if we need to increase her dosage.

We continue the low sodium diet. It won't make a difference on whether her kidneys function or not, but it does minimize the amount of swelling she will experience when her kidneys aren't working.

Bump to Hill

Drat! We didn't go the right direction this morning. Ada's proteins were up to a 3+. She hasn't been this high since the first week we started medication clear back in March.

Today was suppose to be another step down in her prednisone dosage, but I wasn't comfortable with that since she is headed in the wrong direction. So I called the pediatric nephrologist on call (of course it is the weekend when things go south) to get some guidance until Monday. She was very kind and suggested that keeping Ada's prednisone dosage stable would be best over the weekend; and to test the proteins daily, then call if they remain up in the 3/4+ for more than a couple of days, which will put us on Monday, regular business hours, and they would determine whether to increase her dosage. If her protein drops and holds then we can continue the step down.

Of course we are to keep her sodium low and watch for sudden increase in edema, or for a fever. In the event of fever or pain we are to get her to the hospital immediately as this is a symptom of peritonitis, a serious infection. I don't expect we will experience this since we have caught things early.

So that is where we are at this weekend. Watch and Wait. We will of course seek a priesthood administration for her this weekend. Keep her in your prayers. Thank you for your support. Again, we'll keep you posted.

And Holding

OK, her protein tests for the last two mornings have been holding at a 1+. Hopefully over the weekend it will go back down to trace or neg. My concern is that tomorrow, Saturday, is another step down day for her prednisone.

So, no cause for panic yet, just - Holding at 1, praying for a drop, watching for an increase. . . . and waiting, and watching, and hoping, and waiting (how does that song go?).

On a support site they suggested not watching proteins daily or you can drive yourself crazy. but I would hate to be testing weekly and see a spike and not know if we had a bump or if we were into a trend. So for now we choose to drive a little crazy :-)

Protein Bump

Ada was very worried yesterday when she did her protein test and it was up to a 2+ (it has been holding at neg with an occational trace). Since she didn't get her test done until afternoon I told her not to worry about it and we would just make sure we did the test first thing in the morning and would be extra careful about sodium just in case.

(protein leakage tends to increase in normal bodies after they have been active or when fighting illness)

This morning she tested at a 1+. She has bumped up to a 1 for a couple of days before, so we will just be watching closer until it comes back down. We don't need to worry unless it maintains this level for a week, or she spikes to a 3 or 4+ for more than a day or two.

We'll keep you posted

3rd Prednisone reduction, 2 more to go

Stepped Ada down on her prednisone again yesterday, from 25 every other day to 15 every other day. She is getting excited to be done. (crossing fingers and hoping all continues well).

Saw the primary care doctor the other day just to do routine exam. Her blood pressure is good, no swelling, or proteins or blood in the urine. Told us we don't need to some back other than normal well child checkups as long as she continues to do well. He did encourage us to make sure she gets vitamins and fluoride as the prednisone interferes with calcium absorption in teeth and bones.

Who is Molly?

If you read any of the comments to posts in this blog, you will see a few from "Molly's Mum."

Through blogs I have met Molly & her Mum. Molly is a beautiful 3 1/2 yr old girl who has been fighting Nephrotic Syndrome for a year now. Her journey has been similar to Ada's, but she leads out a year ahead. Although she responded well to the treatment, she has relapsed a couple of times and is now looking at a biopsy and full steroid treatment again.

Molly is a real trooper, and has been through so much already as she began life in an orphanage in China. Her story is not only one of NS, but also of the miracle of adoption by loving parents.

So as you pray for Ada, take a moment to remember the other many children of God around the world who are also in need of extra prayers.

Prednisone Reduction

Yesterday we were able to reduce Ada's prednisone from 30mg every other day to 25 mg every other day. She will only take 4 doses of this and then we will reduce again to the next level, assuming we have no setbacks.

A few days ago her protein levels slipped up to a 1+ for the day, but then immediately fell back down to negative and have held there for the las 3 days, so I am learning not to get excited when her proteins raise up to a one. Our instructions say we don't need to contact the Dr unless she holds between a 1&2 for a week, or raise to a 3-4 for more than 2 days.

My understanding is anything can cause a temporary raise in proteins, from a slight cold or allergies, to testing the urine after she has already been up and about for a little bit.

So everything is looking good at this point. We'll keep you posted as we continue the step-down process.