What a Year...

"I will bless the Lord who has given me counsel"

Psalm 16:7

What a year! We started on steroids and we are ending on steroids. The year has been pretty smooth over all, however, we have seen far more protein pop up on those sticks than we thought we would. Here's a summary:

 

January- diagnosed, 3 month course of prednisone

 

Off meds mid April.

 

Negative urine every day until 6 weeks later. Numbers started jumping around and went up to 2000. Emma Kate's little brother was sick. She never got sick but probably did fight it. I contribute this relapse to soy milk and peanut butter cereal she had started eating daily.

 

Got off meds 5 weeks later. 

12 weeks of negative urine. Then, she caught a cold and numbers went up to 300+ and back to neg over a week. The day she was negative she ate a hot dog. Then the next day she had a one day fever and numbers went back up to 300, and down to neg over another week. She had almost no swelling. We treated her naturally and she did not get on meds.

 

A couple weeks later her numbers went up trace, 30, 100, after eating exactly one bite of ice cream. Came down on their own with natural things.

 

A couple weeks after that she ate 1/2 a hot dog and her numbers were trace, then 30, and back to neg....we only eat "healthy" hot dogs now :-).

 

A couple weeks later her numbers started jumping again....30, 100, trace, 30, 100, trace in the morning but 200 by evening (got a 103.5 fever that night), 300 next morning (puffy face), 500, 500 (started pred), 600  (sleeping a lot- looks swollen but not too bad for 10 days into it). So that's where we are now. After the initial dose of pred I had her doctor lower her dose to 8ml daily, then 5 every other day. This is low for her weight but worked equally well during her first relapse, and with less side effects.

 

We had 12 weeks with no meds and negative urine each day. We had 4.5 months with no steroids.

 

 

My big girl drinking her herbal tea! 

Spilling protein makes you very sleepy...

You can tell from the two above pictures when she was spilling 500 the first day, she had very minimal swelling. You can see it some in her face, but her arms and legs looked normal. We went to the ER due to one sided kidney pain and other things...I don't think they even believed me that she was spilling until they ran her urine sample (since she was not swollen). They discharged us since she had no swelling, thank you Jesus,  apple cider vinegar, and tea!!! :-) The result from that visit showed perfect renal function, just protein spill and she was fighting a virus. No bad report :).

 

 

 Day ten, numbers around 600. Looking puffy today. Asked me to go out so they could take a nap. Does she know how much I love her?? ;-)

 

 

SO WHERE DO WE GO FROM HERE???

 

Emma Kate's nephrologist mentioned putting her on a immunosuppresant drug permanently, to try to prevent relapses. Do you think I was okay with this??? Um, NO. I am working to heal my daughter's body from the inside out. The pure fact that we have been able to get her protein down naturally and avoid a couple months worth of high dose steroids is encouraging to me. It tells me that there ARE things we can do that will HELP HER BODY WITH NO SIDE EFFECTS. Now, with that being said, this is just MY approach. I know some people do go on these drugs out of necessity and I definitely think you have to do what you feel is right and needed at the time. Just like Emma Kate is on steroids right now. I do everything I can naturally, but if her numbers remain high, I do not want to risk kidney damage knowing prednisone can get her back to negative.

 

NEW GAME PLAN:

 

Emma Kate was gluten and dairy free for 6 weeks. It seemed as if the gluten was not a problem so I let her have it again, in moderation. Well, considering how many times she has spilled protein over the year I decided to look into the gluten more extensively. I have posted the links I found helpful, below. Ultimately, that is my plan for next year (starting now). We will be gf, df, as much soy free as we can, limit sugars, low sodium, and avoid her delayed response allergy foods too. It sounds like a lot, but mostly we will be gf, df, and soy free. These links helped me understand how gluten could effect the entire body and easily worsen a autoimmune condition. In my research I have come across many, many, people with autoimmune problems who went into and stayed in remission on a gluten free or gluten and dairy free diet.

 

Considering all the problems the little girl in the first link was suffering from, and that she was helped with diet change, I feel certain those diet changes can help Emma Kate. I will be sure to update as we go along!

 

 Diet Change Saved This Little Girl- Autoimmune Disease

 

Gluten free diet put FSGS into remission

 

Does Gluten Cause Kidney Damage?

 

Food and Your Health

 

Video Links:

 

Autoimmune Disease

 

Reverse Autoimmune Disease

 

Gluten and Autoimmune Disease

 

Autoimmune and Gluten Relation

 

Scroll to video at bottom- Boy with NS daily routine

 

Gluten breakdown in the body

 

 

 Quick Tips I Have Learned:

 

1. When facing protein spill, RAW APPLE CIDER VINEGAR! It is very good for you. Helps metabolize food better and keeps swelling at a minimum. Truly amazing. I put about a tablespoon in all Emma Kate's juice drinks. It keeps her peeing, which lowers the risk of infection and other complications associated with swelling. It also gives you more time to naturally allow them to recover.

 

2. Keep the bowels clear. Once the spilling starts, the body tends to stop urinating or having bowel movements. It's important to keep the BM going as best you can to rid the body of toxins, especially if they are spilling due to sickness. Use 100% prune juice or miralx (be careful not to dehydrate though).

 

3. Take daily probiotics to help balance the good bacteria in the gut.

 

4. PRP spray. It's an immune boosting spray that I have come to respect. We do 3 prays daily and it has definitely kept my daughter and I from catching things we were exposed to. PRP spray- link. We buy it off Amazon.

 

5. Eat organic as much as possible, limit toxins and environmental chemicals,  research everything.

 

6. Keep your faith built up. One of the biggest chapters of encouragement to me is Psalm 16. I read it almost every day.

 

7. Understand that nephrotic syndrome is an autoimmune condition and you will better figure out how to manage it. Focus more on the body and less on the kidneys. Look for triggers, keep journals.

 

 

YUMMY TREAT!

 

I need to add some of my recipes, but here is something great for kids on special diets. Marsh mellow pops. No sodium, gluten free, and dairy free. Kids love helping make them, and they love to eat them. I wish I could take credit for this cute idea, but it was my sweet mother in law who came up with this for Emma Kate to enjoy :). Here are some I made for her school party:

 

 

 

 

Well, that is our latest as of 2012. We plan to do some genetic testing regarding foods for Emma Kate. We also will take her to a naturopath to help guide us in bettering her health. I will be sure to update! I have plans for a GREAT NEW YEAR!!!!!!!



All About Vaccines and Kidneys

http://www.vaccinationcouncil.org/2011/10/04/suzanne-humphries-md-medical-doctor-vaccination-risks-renal-patients-kidneys/

Two Weeks of Spilling- Still Med Free!

“Let food be thy medicine and medicine be thy food”
― Hippocrates 

Emma Kate had a solid 12 weeks of negative urine and no meds, hooray!!! And can you believe her doctor was surprised I knew exactly how long it had been?? I mean, it is sort of a BIG deal. Anyway, then she caught a cold :(. It was for sure a bummer to see the color on that stick getting darker by the day. I truly never thought I would care so much about my child's urine! However disappointing, this time was different than the last...for me anyway. I had decided a while back I was going to trust God no matter what! Of course I have always trusted God, but this was a new trust I was seeking. I put my prayer for Emma Kate on my mirror and have been diligently praying it each day, several times. I also had everyone we know start praying. God has been renewing my walk with Him and that's why this time was different.

The last time I saw protein in my daughter's urine I researched everything I could to find something to help her. And I stuck God in between all that...frantically praying as I drove to the store to pick up some herbs for her. He was not my focus, Emma Kate was. This time I had a PEACE. That "peace that passes all understanding"-yes, that was wonderful.  I did not cry, I did not fear, I just trusted God and did what I knew to do. I have to say it is not an easy balance between trusting God and doing your part too. I have to daily work to make sure my focus stays on God, rather than getting caught up in what I can do for her. "Trust in the LORD with all your heart; do not depend on your own understanding" Proverbs 3:5.

 All along this journey I have prayed for WISDOM. And the Lord has been faithful to show me things. He helped me stumble across a website that has given me a wealth of knowledge in treating the human body naturally. From this site I came up with the special "kidney tea" I make for Emma Kate. God also prompted me to put raw apple cider vinegar in all of Emma Kate's drinks while she was spilling protein. Initially this was to help her get over the cold, and then I realized how much it was helping her to not swell, so I kept it up! That stuff does amazing things for the human body! Here is a list of the health benefits of raw, unfiltered apple cider vinegar-

Check out these ingredients and what they do for you:

Potassium – helps to prevent brittle teeth, hair loss and runny noses.

Pectin – helps to regulate blood pressure and reduce bad cholesterol.

Malic Acid – gives ACV the properties of being anti-viral, anti-bacterial & anti-fungal.

Calcium – helps create strong bones and teeth.

Ash – gives ACV its alkaline property which aids your body in maintaining proper pH levels for a healthy alkaline state.

Acetic Acid – It appears that this acid slows the digestion of starch which can help to lower the rise in glucose that commonly occurs after meals.

1 tablespoon of Raw Apple Cider Vinegar mixed in 4 ounces of purified water after a meal has been used as a natural remedy for heartburn and as a replacement for toxic heartburn medications.

Raw Apple Cider Vinegar may help improve bowel irregularity, thereby removing toxins from the body at a faster rate.

Helps clear up skin conditions and blemishes giving a smoother texture and complexion.

Raw Apple Cider vinegar may also help with joint pain and stiffness.

Apple Cider Vinegar helps to break down fats so that your body can use them rather than store them. For this reason, many diets include ACV in their regimen.

On a small scale, ACV was studied by researchers at Arizona State University. The preliminary study was published in the Diabetes Care journal. It reported that ACV helps reduce levels of glucose.

This information is from www.globalhealingcenter.com

HERE IS WHAT WORKED FOR US:

TEA TIME~
*Disclaimer- It needs to be stated that I am not a doctor and all the things listed on this blog should be reviewed by your personal health care professional before trying.* I am just a mom, hoping to help others by sharing our experiences.

There are two different teas I made for Emma Kate when her protein was spilling.

1.) Dandelion leaf tea- boil 1 cup of water and add a good pinch of the dried leaves. Cook down to about a 1/2 cup (10-15 minutes) cool, and drink. 
2.) Raspberry tea- boil 1 cup of water and add 4 juniper berries, a good pinch of ginger root, and good pinch of raspberry leaf. Cook down to 1/2 cup (10-15 min) cool, and enjoy!

***IMPORTANT NOTE! I READ THAT TAKING JUNIPER BERRIES WHEN YOU HAVE AN INFLAMED KIDNEY IS NOT GOOD. Otherwise, they are good for the kidneys in small doses. They never bothered my daughter but we will use them very sparingly in the future. Any combination of the above tea ingredients (minus the juniper) seem to work great when spilling, or not spilling. We have daily "tea time" now, right before dinner. Usually raspberry leaf and, or dandelion leaf. My daughter has gotten so used to it that if we miss a night she will remind me! I bought her a special Hello Kitty cup that we use only for tea time, to try and make it a bit more exciting :).

-It has been my experience that adding raw honey to the tea makes them less effective so we drink it plain. I give Emma Kate one of each of these most days, or at least one a day. Along with about 3 ml of raw apple cider vinegar in all of her drinks and she is sure to be peeing all day! Peeing all day means continuing to flush toxins from the body, keeping the kidneys going, and not swelling (which means much less potential for infection and more time to heal naturally).  I also gave Emma Kate miralx a couple times to ensure her bowels were emptied of toxins. This is very important in the healing process for the body. Especially if you are spilling protein, because the tendency is for one to stop going to the restroom. I don't love the idea of miralax due to the chemical nature, but it's easy and works great.  A natural alternative that works really well on occasion is 100% prune juice (about 4 oz for a small child).

My experience with all this:
The second time Emma Kate started spilling protein she started swelling some almost immediately, even though she was eating almost no sodium. She got put on prednisone and didn't start peeing until I started making the teas for her. That night her numbers started going down. The last time she started spilling I immediately started doing the tea and ACV treatment, along with miralax. I let her have much more sodium than the last time and she had NO swelling. Her face was slightly puffy two mornings and the night before she went back to 0 her arms were slightly puffy. And that was with 2 weeks of spilling! I love that God has given us natural ways to care for our bodies! Here were how here numbers looked:

Sunday (start of cold)- trace, 30, 100, 300+, 300-, 100
The second Sunday- light trace (cold is gone but I forgot to make her tea)
Monday-100 (was warm and slept all day- seemed to have caught a one day thing her brother had)
Tues-300, 300+, 200ish, 100+, 100-?...Hard to tell with those colors!
The third Sunday-lighter than negative! Praise God!
Mon- neg, neg, neg......

I also want to mention that if she is spilling protein I greatly limit gluten, sugar, eggs, all allergenic foods and foods that are prone to aid inflammation. I try to give her plenty of foods that are anti-inflammatory and natural diuretics. Lots of fresh fruit and veggies of course, and all her vitamins and supplements (fish oil, Vit D, Vit C, PRP spray, probiotics, immune boosters and allergy support drops).

To Summarize: we made it through 2 weeks of spilling protein and DID NOT HAVE TO GET ON MEDS! All glory to God, she went back to negative naturally :-)

Allergy Testing

It's been a while! Here's the latest......

It's been about two months now since we had the Elisa-ACT done for Emma Kate.  This is delayed food allergy testing done by blood. I felt it was important to do this to give her body the best chance it has at fighting off invaders, rather than keeping it busy with things that should not cause an immune response.

Such a big girl!
We had to fill 3.5 tubes with blood in order to do the test....quite a lot for such a little person! It was the biggest challenge actually finding a place to draw that much blood on a child, but we finally did. By the time we got there (3rd place we had been to in a row!) both of my kids were pretty over it....especially considering they had waited so patiently for an HOUR at the first place, just to be told they could not draw her blood. And, Emma Kate could not drink or eat anything until the blood was drawn. Ugh! Very frustrating.
 Anyhow, once we found a person to do it, to my delight Emma Kate hopped in the enormous chair and stuck her arm right out.  She had to be stuck a couple times in each arm but barely shed a tear! She really is tough (at least when she wants to be). At last, we had completed the much dreaded task. Now, I just had to make sure it was packaged correctly and send it off! I definitely kept my fingers crossed that it would get to the right place with no problem. Especially since it was time AND temperature sensitive, and a steaming 100 degrees outside. Thank God, it made it :-).

We quickly got the results...
Of the 144 substances tested, Emma Kate only had a reaction to 8 things and 1 food group. It was no surprise the food group it said to entirely avoid was dairy. However, it WAS very surprising that she had a strong reaction to peanut, white rice, and Green dye #3. Also, a moderate reaction to lemon. The peanut definitely got my attention. It just so happened that a while back when she had a relapse she had just started eating a peanut butter cereal with soy milk every day. The DAY she started eating it was the day her numbers started jumping...100, 30, trace, 300....all over the place.  I think it was the combination of these two things that caused her to start spilling. Doctors of course refuse to acknowledge food could play any role with NS, but sometimes you just have to go with your mommy instinct. We will NOT be eating that cereal with soy milk EVER again.

I do think it was very beneficial to do the testing. Before we got her results I used lemon ALL the time to cook and I would have never known it bothered her! Also, since we eat a lot of gluten free things (she is not entirely GF anymore, just DF), she was eating a good bit of white rice. We pay close attention to that now. The testing made me much more aware of things that were happening in her body. Most people do not realize that you can have delayed food sensitivities that do not come in the form of a rash or anaphylactic shock. They can be sneaky and mess with your body in seemingly unrelated ways.

Team EKC- Let's Walk- Let's Reach Our Goal-

PLEASE walk with us September 15, at Gerrard Landing Park in Roswell, GA! Come support Team EKC or donate to Nephcure to help us reach our goal of $2000.  We need your help to find a cure for nephrotic syndrome. The walk is FREE! For more information, or to donate or register to walk, please click the link below. This is our home page link- once there, click "MY TEAM PAGE" to register to walk with Team EKC.  THANK YOU!

http://atlantagawalk.kintera.org/faf/donorReg/donorPledge.asp?ievent=1029800&lis=1&kntae1029800=25A125D1EDE044E7BD36EF4A38FFD1B3&supId=363411778

What is Nephrotic Syndrome???

Never heard of it? Neither had we. That is probably due to the fact that it only affects 5 out of every 100,000 kids....pretty rare.

The basic definition: when the kidneys spill protein into the urine causing great swelling all over the body.  The swelling can lead to dehydration, infection, and blood clots if poorly controlled. The medical definition and details are below, as taken from the Nephcure website:

Nephrotic Syndrome is a collection of signs and symptoms that occur when glomeruli are damaged.

What Causes Nephrotic Syndrome?
Most often, Nephrotic Syndrome is defined by its primary diseases that attack the kidney’s filtering system. Doctors often call these diseases "idiopathic," which means that they have arisen without a known cause. These primary diseases include Minimal Change Disease (MCD), Focal Segmental Glomerulosclerosis (FSGS), and Membranous Nephropathy (MN) and are identified by kidney biopsy. (There are many other “secondary” causes of NS, including diabetes, cancer, amyloidosis, lupus, vasculitic disorders, viral infections, drugs and allergies, among others.) MCD is the most common cause of Nephrotic Syndrome in children - almost 85% of children with Nephrotic Syndrome symptoms have MCD. As a result, the term “Nephrotic Syndrome” is often used interchangeably with MCD. FSGS is the second most common cause of nephrotic syndrome in children, at 9.5%, and research is indicating that FSGS is on the rise much more than the other two causes, and is more difficult to treat than MCD. 3.5% of children with nephrotic syndrome is caused by Membranous Nephropathy or another cause.(There are many other “secondary” causes of NS, including diabetes, cancer, amyloidosis, lupus, vasculitic disorders, viral infections, drugs and allergies, among others.) MCD is the most common cause of Nephrotic Syndrome in children - almost 85% of children with Nephrotic Syndrome symptoms have MCD. As a result, the term “Nephrotic Syndrome” is often used interchangeably.

1. Each person has two kidneys in their lower back.

2. The kidneys continuously filter blood and produce urine to remove waste products, salts, and excess fluid.

3. Each kidney is made up of approximately one million tiny filters called "glomeruli.” Much as a coffee filter keeps coffee grounds in, glomeruli keep valuable cells and protein in the blood.

4. When glomeruli become damaged, proteins begin leaking into the urine (proteinuria). Proteinuria causes fluid to accumulate in the body, and prolonged leakage can lead to kidney damage and even failure.

What are the facts of Nephrotic Syndrome?
Nephrotic syndrome may affect adults and children, of both sexes and of any race. In total, 26 million Americans suffer from Chronic Kidney Disease, with Nephrotic Syndrome as one of the most common forms.1 “Idiopathic” Nephrotic syndrome (NS), or Nephrotic Syndrome that arises seemingly spontaneously, is a rare disease syndrome and yet responsible for approximately 12% of all causes of end-stage kidney disease (ESRD) and up to 20% of ESRD in children.2 Approximately 5 out of every 100,000 children are diagnosed with Nephrotic Syndrome every year (incidence) and 15 out of every 100,000 children are living with it today (prevalence).

How is NS treated?
Your nephrologist may recommend:
• Medications that suppress your immune system
• Diuretics and low salt diet help to control edema
• A medication that blocks a hormone system called the renin angiotensin system (ACE inhibitor or ARB) to control blood pressure or lower urine protein
• Anticoagulants to prevent blood clots
• Statins to lower the cholesterol level
• Maintaining a healthy diet: Correct amounts of protein and fluid intake according to your nephrologist’s recommendations. A healthy diet consists of low salt with emphasis on fruits and vegetables, low in saturated fat and cholesterol. A low salt diet may help with swelling in the hands and legs.
• Exercising
• Not smoking
• Vitamins
Good news: Corticosteroids help approximately 90% of patients who have MCDBad News:
• 70% of children will experience a relapse.
• Corticosteroids have potentially serious adverse effects such as obesity, poor growth, hypertension, diabetes mellitus and osteoporosis.
• Corticosteroids are sometimes ineffective, called “Steroid resistance” or a person can become “Steroid dependent.”
Alternatives (which all carry significant side effects) include:
• Immunosuppressants such as Cyclophosphamide (Brand names include Endoxan, Cytoxan, Neosar, Procytox, Revimmune) and Cyclosporine (Brand names include Neoral, Sandimmune, Gengraf)
• Tacrolimus (Brand name: Prograf)- another immunosuppressant
• Mycophenolate mofetil (Brand name: CellCept)- another immunosuppressant
• Antibiotics such as Levamisole
• More research is needed to identify new drug therapies

What are the complications of NS?• Edema - swelling
• Renal vein thrombosis - blood clots
• Increased blood cholesterol, can lead to Atherosclerosis - hardening of the arteries
• Malnutrition
• Skin breakdown
• Infection such as pneumonia
• End Stage Renal Disease
• Congestive Heart Failure
• Pulmonary edema - fluid in the lungs

So, as you can tell much research is needed in figuring out this condition. We can only get that research through greater awareness and more DONATIONS. Even $10 is GREATLY appreciated!
http://www.nephcure.org/make-donation-nephcure

You Are What You Eat

It is greatly coming to everyone's attention how all the chemicals and toxins in our food and environment actually DO affect us. Hmm, not much of a surprise. Nephrotic syndrome, often called " nephrosis " has been around for hundreds of years. It used to be referred to as " dropsy" which simply meant " water- logged". Dropsy was either caused by kidney problems or heart problems and is even mentioned in the Bible.

Over the many years of reported cases of nephrosis, most of them were environmentally related, and still are. This makes perfect sense when you consider that the kidneys are the main organ responsible for removing toxins from the body. Many cases were induced from eating something poisonous, after getting scarlet fever, having many upper respiratory infections, getting vaccinated, bug bites, and commonly today after getting a nasty virus such as strep. Doctors today say many cases of nephrosis have an unknown cause. However, when you consider all the known causes it seems ns is always induced by something that is percieved as foreign to body, and the body has a hard time properly fighting it off - thus going into protection mode and creating inflamation.

This brings me to my main point: FOOD PLAYS A MAJOR ROLE! Think about how God created the earth. Luscious plants bearing fruit, fresh grown vegetables and free range meat. Animals ate what they were intended to because they fed themselves. No hormones, no antibiotics, no injections, no vein popping cows or chickens that grew at twice the normal pace. No food that could last for a year and not spoil. Consider the vast difference here...how could these crazy changes NOT harm us???

After reading about organic foods and chemical free products, it did not take much convincing that that was the right thing for us. Emma Kate's kidneys have to work hard enough each day, she doesn't need them weighted down with extra toxins and such to try and filter out. Neither do we. My grocery bill has certainly TRIPLED, but I know it's so much better for us.

I don't know if this photo is 100% accurate, but it sure makes you think twice about what you put in your mouth:

There are a couple studies I have found on the web and in online journals linking cow's milk and allergies to nephrotic syndrome relapse. Here are some of the best studies and related sites I have across:

http://onlinelibrary.wiley.com/doi/10.1111/j.1651-2227.1992.tb12164.x/abstract

http://journal.publications.chestnet.org/article.aspx?articleid=1062980

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2895907/

http://www.drmanik.com/Milk%20allergy.htm

http://www.naturalpedia.com/Nephrotic_syndrome.html

http://www.naturaleyecare.com/health-conditions/allergies-sensitivities/allergies-related-conditions.asp

This is one of my most favorite sites, with tons of helpful information! I made one of the kidney teas for my daughter when she relapsed, and  within a few hours she started peeing and her numbers were lower the next day. She had been on steroids for a few days already, but the tea DEFINITELY seemed to help. It's a huge site with lots to explore:

http://www.herballegacy.com/Dropsy.html