And Holding

All's good. Still toggles between trace and negative from day to day. I think that is suppose to be pretty normal. Maybe we should have another child track for a week or two and see just what is "normal". Good opportunity to teach the kids about having a "control" in a science experiment. Not that you can "control" anything about Ada :-)

Steady Progress

Ada has been on 30 mg of prednisone every other day now for 2 weeks without any negative effect. She continues to show only neg or trace proteins. She is active and otherwise healthy, and doing well with schoolwork.

I am amazed at the amount of personal responsibility a now 7 year old (happy birthday Ada) can take for their own care. When Grandma and Grandpa took her out shopping for her birthday, Grandpa picked himself up a package of malt balls. She decided she wanted to get some too, but then asked to see how much sodium was in them. She took the package from Grandpa to read the nutrition lable and then told them, "Oh, 150 salt. I can only have 100 salt." So they went and found lifesavers instead (zero sodium). She does the same with breakfast cereal and other food items brought into the house. Good Girl, Ada

Prednisone side effects

I thought I would comment on the side effects we have seen in Ada since she has been on Prednisone.

The first thing we noticed was the constant hunger. She never feels full and is always hungry. To help I try to keep lots of fruit and veggie snacks around. But she will sneak bread given the chance.

The second side effect is an upset stomach. I don't think she was eating as much with the prednisone as she should be. So I told her she had to quit downing the handful of pills all at once and had to eat a bite of food before and after each pill. That seems to have helped.

Finally, her energy level. When grandpa heard she would be placed on a steroid (the prednisone) he said, "Are you sure you want HER on a performance enhancing drug??" Of course prednisone is not the same type of steroid as those abused by the athletes, but it does seem to increase the energy level. Ada has always been an energetic child, but now she is really intesnse. So when she is happy, she is giddy. When she is feeling silly she gets crazy. When she is frustrated she becomes very rude, and when she is upset she has trouble calming down. We have a corner for her to sit in until she can "control the prednisone". I know it is hard for her, but she must learn that no matter how you are feeling, you can't let the drug control you. She handles that pretty well and is usually back in control after a short timeout.

Otherwise she is our same fun little girl, always on the move and into everything.

1 month of treatment - Photo Log

I thought it would be good to show some photos of how Ada is progressing. First, here is a picture showing Ada before, at diagnosis, and 1 month of treatment.

click on any of the pictures to see them better.

before NS, at diagnosis, 1 month of treatment. On the last picture she looks pretty normal. If you look close along her jaw line you can see some of the visual effects of the prednisone, looks like she is starting to develop a "double chin"


Here are updates of some of the other pictures we have shown.
Her torso: full edema, 1 mo treatment (normal)


Her feet: with edema, 1 mo treatment (normal)


The dip stick test results: blue/green shows proteins, yellow shows lack of proteins.

Addressing the Low Sodium Diet

From the beginning I understood that the reason for the low sodium diet was to reduce edima and pressure on her body. So at the visit with the specialist I asked about the need to continue the low sodium diet now that her edema is gone and the protein leakage is controled. This is what I learned.

While Ada is on prednisone it will cause her to retain salts and water, which will cause an elevated blood pressure and unnessesary wear on her heart and other organs. So as we drop the prednisone we can be less strict in the sodium restriction.

Muscle Spasms

Ada has started getting muscle spasms in her fingers and toes. Similar to a charley horse, the muscles or tendons or something cramp up, causing the fingers or toes to become stiff and pull in one direction. When they are bad they can be painful up to her elbow or knee.

The family Dr suggested it could be a potassium difficiency due to the low sodium diet and suggested just keeping plenty of bananas in the house. The specialist said this is something they see that they can't explain. He said they have tried all sorts of things but don't see a consistent response, but it seems to go away after a time.

For now, when she does get a cramp we have found that working the area, having her open and close her hands or walk on her feet, seems to work out the cramp and then she is fine for a time. They do not happen too frequently, probably less than daily, and are more curiosity and nuisance than a problem.

Aren't these bodies of ours a curiosity?

Follow up with Nephrologist at 1 month

We just got back from our first follow up with the Nephrologist (kidney specialist) at the University Hospital.

Great News. They are thrilled with how quickly she has responded to the medication and continues to have days with negative and trace proteins. We start the weaning process to get her off the medication, which should take until the first of June if all goes well.

The Nephrologist said that we will see occational bobbles where her proteins will go up a little, especially if she is fighting a cold or allergies, or has been especially active, and not to worry unless they stay at a 1 or 2 for a week or if they elevate to a 3 or 4 plus; or if she shows signs of edema (swelling).

As we ween her off, hopefully the proteins will stay down and this will be her last visit to the nephrologist; There is a good chance she will probably have at least one recurrence, but they are hopefull that with her positive response that she will be one of the lucky ones who only ever have one episode. But if not, at least now we know what to look for and will be able to catch it early.

She continues to be really good about taking her pills and following the low sodium diet (fear of blood tests or the idea of a kidney biopsey really motivate her to be diligent).

We have been so blessed, and again thank you for your prayers, interest, and kindness.