Wednesday, May 28, 2008

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.

Friday, May 23, 2008

:-( 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.

Tuesday, May 20, 2008

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.

Saturday, May 17, 2008

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.

Friday, May 16, 2008

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 :-)

Thursday, May 15, 2008

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

Saturday, May 10, 2008

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.

Tuesday, May 6, 2008

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.

Friday, May 2, 2008

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.