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.

Back Down

Ada's proteins held at 1 over the weekend, but today, monday, they are back down at a trace. So we just keep monitoring, watching the sodium, and praying that she will continue to improve.

set back?

Ada has been testing negative for proteins for the last week, really encouraging us. But a couple of days ago she crept back up to trace, not a concern; and now is at a 1 (on a Neg, Trace, 1,2,3,4 scale).

She does have a cold, so maybe that is just par for the course. At this point we don't need to do anything different unless her proteins stay up for a week, or raise up to a 3 or 4 for a couple of days. And we have an appointment with the nephrologist the end of next week. He will be able to know at that point if we can continue as planned weening her off the prednisone or if she will need to stay on it a little longer.

So here is hoping that her cold clears up the the proteins go back down.

Give us this day our Daily Bread

Boy this phrase has new meaning. Every time I turn around it is time to make bread again. I really enjoy making bread; but depending on the homemade bread creates a greater demand than I have had before.

I guess I could buy bread for the rest of the family and just make Ada's; but everyone else prefers the homemade bread too - even without the salt.

I have read stories of the pioneers, and rising each morning to make the daily bread. I thought maybe that was just because things didn't keep, and maybe that was the case, but with a good size family it really is easy to eat up several loaves of bread in a day or two, thus time to make bread again.

But the kids are good helpers and enjoy rolling the rolls and forming the loaves. And Ada loves her bread over everything else.

Low Sodium Options

The other day we had a school field trip to the zoo. Because it is a good couple of hours in driving I wanted some snacks for the kids, which Ada would be able to enjoy. Fruits are all good, but they also needed a bread or some kind of carb. All the standards were out, pretzels, crackers, etc. So I sent Dad to the store to find some low sodium snacks.

Dad came back from the store with some low sodium chips and rice-cakes. The chips were suppose to be fruity, but they were so sweet that after one chip none of the kids was willing to eat any more. I always thought of ricecakes akin to eating styrophome, but I have to admit that the apple cinimon rice cakes were pretty good, and compared to my pretzels weren't actually any dryer. We had a great time and enjoyed the snacks on the way home.

This weekend is Easter and we have family coming in to help celebrate. I knew the traditional ham was out, but didn't expect the turkey to also be out. Since turkeys are now injected with juices, depending on brand the turkey was 450 - 650 mg of sodium per 4oz serving - that's before gravey and everything. Fresh turkeys are a little pricey so I looked around for other options. Ada and I found a whole chicken that was only 60mg. So for Easter this year the family will all enjoy a turkey, and Ada will have her own chicken, which Dad has begged her to share with him.

Most easter candy is low sodium though, except malted eggs :-) Happy Easter

Negative for Proteins!

Yeah! Today Ada tested negative for protiens. After the first week, when her proteins initially dropped, she tested negative for one day. For the last week she has only been showing a trace of proteins, although yesterday it was a close call between trace and negative. Today it was Negative!! Here's hoping it holds.

The other day when we came out of the Drs. with news that her blood pressure had dropped, Ada looked at me and asked, "Do you think I'm doing better because so many people are praying for me?" I told her, "Absolutely!" She smiled big. I told her today that since so many people are praying for her to get better and she is being blessed that she needs to remember to pray for everyone else that they will receive the blessings they are in need of. I am grateful for the opportunity she has to learn about the power of prayer.

Improving still

Another Dr Appt. Her blood pressure was down closer to what they want to see. It was 110 over something. If I understand right, they want the upper number to be 100 or less, for a child her age, hight, weight, and gender.

They also want a pee test to check for blood in the urine; but the last two times she hasn't been able to produce. So they sent home a container for next week so we can catch it when it comes.

Ada continues to look good and is very active. She is tolerating the medicine and it is holding her proteins at a trace. She is getting a pretty good appetite, but an eating schedule is helping with that.

Holding Steady

Ada's Protiens are holting steady at just a trace, which is good. Her edema (swelling) is completely gone, which is also good. And she isn't looking dehydrated today.

Unfortuneately, her blood pressure remains high. It's not so high that it needs to be medicated yet, and the best way to treat her high blood pressure at this time is to continue to maintain a low sodium diet. So we are keeping it low, but not as low as we did initially.

Feeling Blessed - again

Today Ada came to me and said she didn't like how her eyes looked now. They looked pretty sunken and dark. I am hoping it is just part of the adjustment as the syndrome reverses itself and her body tries to find equelibrium again.

In looking for more answers I can to this site by another mother of a child with Nephrotic Syndrome. As I read her story I count each blessing since things were so much worse for them, and am grateful for how things were instead of how they could have been.

http://www.geocities.com/rausha/neph.html

Taste adjustment

Quick note: There was only a trace of protein this morning, so we are keeping a good trend. Edema continues to go down. She has her belly button and ankles back.

The other day Dad and I went out to dinner for a much needed date. We went to one of our favorite restaurants and ordered a favorite meal. I was surprised the next morning to find my tongue feeling thick and dry, and my whole self feeling generally sluggish from the sodium in the meal. I didn't realize you could become so sensitized so quickly.

Lookin' Good

We are so excited!! The treatment appears to be working. Her urine tested negative for proteins this morning. Hurray! Also, much of the swelling in her body has gone down. There is still some edema, but she is getting her ankles and knees back. And we have Ada's laughing eyes back. She is still a little puffy in the cheeks, but I suspect those are the prednisone cheeks (moonface) that will go away once she is weened off the prednisone. Hurray!

Now that she is doing so well and the edema is under control I think we can go up to the original sodium restriction. Which should be cakewalk now.

Hygene Hazards

One problem that we have encountered, which I hadn't anticipated, has been bathroom hygiene. Because Ada's stomach, pelvis, and thighs are so puffy it make it very hard to properly clean after going to the bathroom.

Also, we noticed her "running" in a side to side waddle because her legs would rub together and get sore. She was starting to get very raw in that region.

To combat this I got out an old peri-care bottle from a past pregnancy and taught her to "wash" and dry after going to the bathroom. This eleviated much of the soreness and made it easier to take proper care of herself.

Turning the first corner!

Hurray! We are so excited. Yesterday the edema seemed to be down considerably in her face around her eyes, although it was still significant in her abdoman, pelvis, and legs. Today the protein level in her urine showed it starting to drop a little. Of course it will take a couple of days to show a trend, but we are very hopeful.

The hospital had told us that a few kids started to show improvement in as little as a week (it has been a week to the day); but average was 3 weeks with some taking as long as four.

I know she is improving so quickly because of the prayers by so many in her behalf and our diligence in following the dietary recommendations. Thank you everyone for your prayers. They are making a difference.

Reducing Sodium - trickier than you think

To manage the edema and help the kidneys recover Ada was placed on a low sodium diet. I quickly learned that "No added salt" did not equal "low sodium"



The first days after we came home from the hospital Ada continued to increase in puffiness. The skin around her eyes was so tight I called the hospital, worried about infection, but because the skin was not warm and she wasn't running a fever they said it was just the edema and we needed to restrict sodium just as much as we could. I made it my personal goal to keep her sodium between 300 & 500 mg a day.



The charts included (click on to increase size) show how much sodium is in natural and processed foods. Pretty much anything in a can or box was out. Also out was anything made with salt, baking powder, or baking soda. We took everything high sodium out of the cupboards and put it down in the pantry. It served us well that I was use to making a lot of things from scratch.



My biggest concern was bread. One slice of store bread is 160 mg sodium, almost half of what I wanted her getting. So priority number one was to make our own bread. I switched from butter to shortning, left the salt out completely, and found the lowest sodium milk I could. Doing that we had bread down to 10 mg per roll.



We filled the house with fresh fruits and vegitables for her to have for snack, and started cooking everything without salt, or season salts.



I also found a Baking Powder that is sodium free. It was kinda pricey, but it let us put pancakes back on the menu. I also got a recipe for tortillas that had no sodium, and were surprisingly easy to make. So now we can make veggie wraps.

I learned that yogurt, sour cream, and cream cheese made good substitutes for mayo and dips, and I also learned to make vinegrettes to use in place of salad dressing.

One more thing we did. We switched off our water softener on the cold line to the kitchen sink. I was surprised to learn how much sodium that puts in our drinking water. Not a big concern, except when we are trying to limit sodium.


Doing all this we have been able to keep her diet in the low 300's. And it must be working, because the edema is reversing and the protiens are starting to drop. Hurray!!

Once she is doing better, we will ease up and return to the hospital recomendation of under 2000 mg a day. But that should be cakewalk compared to what we have been doing. And I am convinced if we hadn't restricted her sodium so much she would have been hospitalized for pressure on her heart or lungs due the increasing edema.

Mayo Clinic has some great recipies for low sodium (or low fat, or gluten free for that matter) which I look forward to trying. http://www.mayoclinic.com/health/healthy-recipes/RE99999