Wednesday, July 25, 2012

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!

Tuesday, July 24, 2012

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.

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!

Monday, July 23, 2012

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 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:

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:

Wednesday, July 18, 2012

What To Eat??!

People always ask what Emma Kate eats since she is GF, DF, and low sodium. At first I too thought there would be almost no options...but there are! And many kid friendly snacks too. Rather than list out all the different foods, I'll try to get most of them on here in pictures. Some of the foods aren't exactly low sodium, but they are not high- so we can work with them. And almost all of these items are GOOD! Not just good for being GF :-) (if you know what I mean!). I shop mostly at Kroger. They make it easy by having the separate health food section. The reason we eat gluten and dairy free... I have read enough about it helping prevent relapses that I convinced it's certainly something worth trying!

                      My new and improved pantry...the labels make things much easier. GF-DF-Low Sodium...everything in the right place! Especially if someone else is watching Emma Kate:

                                                              Great breakfast foods:

We have found almond milk to taste the best on cereal. Natural maple syrup is better for you and 0 sodium. Almond butter, 0 sodium. My daughter LOVES the enjoy life chocolate bars.
                                                              Great foods for lunch:

Rudis GF bread is the best. Kettle baked hickory honey barbecue chips are the ONLY ones I have found that are flavored that Emma can have. Some of the Nut-Thin crackers have dairy, so read ingredients always. Frog ranch salsa: only 40 mg in 2 tbls and very yummy!


Lots of GF and DF ice cream options. "Daiya" dairy and soy free cheese. Tofutti's cream cheese and sour cream. Liquid amino's for cooking. Tom's Red Mill corn bread. I normally don't like corn bread, but this stuff is GOOD! It reheats well too. I have learned that organic anything is almost always lower in sodium.

These are some great no and almost no sodium snacks. The little things are: raisins, applesauce, cliff fruit rope, Target brand fruit mash ups and fruit shreds. Larabars are mostly 5 ml with no allergens. Some have more sodium and dairy though, you have to check. My daughter loves the plain popcorn from Trader Joes.

These foods are SOOO good they deserved their own picture!

The Enjoy Life brand is such a life saver. And all their products I have had taste really good. They also make DF chocolate chips.

Aside from these foods about 1/2 of what Emma Kate eats is fresh fruit and veggies. Her favorite meat is fish, and she eats chicken regularly too. We avoid food dyes, limit preservatives, and buy organic as much as possible. This is important since the kidneys filter out toxins! We try to really limit soy and limit the chocolate (not sure if these had to do with her relapse or not). I also rotate our foods regularly.
Later, I'll post some great recipes I've found or come up with that the whole family can enjoy. Also, I'll post our guide to eating out (yes, it did take forever to make!), and the spread sheet I've created that categorizes all the different foods and if they are good or bad for Emma Kate (for many different reasons). I've done all these things in hopes of preventing future relapses. And if she does relapse, I hope these charts will help me to narrow down which foods may have contributed. I also keep frequent logs of what she eats, so I can determine what may have caused an increase in protein. I always wanted to be a nurse, so I guess I got my wish! Haha

Tuesday, July 17, 2012

Our Emma Kate. Our Inspiration.

This is our precious Emma Kate:
Beautiful inside and out! She is the sweetest, silliest little thing there ever was ;) ...I may be just a little partial. The entire time she was at the hospital she was SUCH a trooper. Never shed a single tear or complained about the treatments. Even through all the needle sticks, IV's, night wakings, ect., she was more brave than us.  The nurses were impressed. We were all impressed.
There were so many unknowns, and the doctors were far from encouraging! It didn't help matters that my son (5 months old at the time)was fighting a 104 degree fever and double ear infections. Thank God for family! And thank God for all the people lifting us up in prayer. With so many hard things coming at us at once, we were so thankful Emma Kate embraced the situation so well. Seeing her strength helped us out.
I cried more then than I have in my entire life. Part of the tears were from seeing how the steroids affected my sweet little girl so much. She went from hugging and smiling to hitting and not wanting to be touched, overnight. Despite the behavioral changes on the second day she still did well with the nurses and treatments. Thankfully, by the third day the initial shock to her system had calmed down and she was MUCH better. Needless to say I hugged on her ALL day that day, since she hadn't let us touch her the day before. A 2 year old not wanting to be touched or hugged by a parent is so much harder than you can imagine. Especially when all you want to do is love on them and let them know it's okay.

 Right when we got back home my husband and I went to the grocery store as there was NOTHING in the house with low enough sodium for her to eat. We went to the store and found a few things. She is now entirely gluten and dairy free, along with low sodium.  When I go to the store and find somthing she can have I get SO excited! This is somthing people always ask about: "how has she done with all the diet changes? That must be hard!" The answer to that is simple. She has done amazing. Never ONE complaint about something she can't have- which is a lot.  Pizza used to be her favorite food, given the sodium alone it really isn't an option now. However, we recently found out Mellow Mushroom offers gluten AND dairy free pizza! The sodium is high but we work around it. She was SOOOO excited about this.  We also make it for her occasionally at home. Fruit also happens to be one of her most favorite things to eat. I love that she can still have as much of it as she wants! She is so good about the food though and eats SO healthy.  She even takes her own crackers to church with no problem. She understands this is somthing we have to do and she has never questioned it. I won't have my girl eating nasty stuff though, or torture her by eating things she can't have. My quest has been to be the most amazing natural cook ever (this is challenging with NO salt). I have found a way though, and we all eat the way she does, unless she is not with us.

She is now 3 1/2 years old, and every morning she'll run into the bathroom and shout "mom, I'm going in the little blue potty!" (I have her pee in a little training potty so it's easy to test). Then she stands and waits as I test her urine for protein and says "is it negative, is it negative??!" I'll say yes it is! And she runs happily into the kitchen to pick out her breakfast. I pray everyday the nephrotic syndrome will not return, and if it does that God will guide me in treating it naturally without having to go back on prednisone and zantac (has to take zantac too bc the pred causes ulcers and bad reflux).  I don't want her to ever be able to question if I did enough to help her through this and be healthy. She inspires me daily to keep digging, searching, praying for ways to get through this thing and beat it.  I am not a quiter, and I hope to teach her the same.

I forgot to mention how much she adores her little brother :)

Swollen From the Protein Spilling:

Get Involved!

The Nephcure Foundation is the only organization dedicated to finding a cure for the mysterious nephrotic syndrome and related kidney disease. Please join the fight against kidney disease by raising awareness and helping support them. They do walks all over the U.S. Their motto is: "saving kidneys, saving lives". Look at my "Links" for more information.

Monday, July 16, 2012

My child is swelling!!!

I guess I'll start all this from the beginning... Two weeks before my daughter's third birthday she caught a nasty virus(they think it must have been strep even though she tested neg). She was sick for a few days (fever,rash, ect.) and then developed an ear infection. She was prescribed azrithromiacin. Some time that week we noticed she was gaining weight but didn't think much of it.

Well, the morning after starting the antibiotic she woke up totally SWOLLEN. From her eyes to her toes; this was disturbing especially considering she was supposed to be past the virus and getting better. Along with the swelling, she was not going to the bathroom hardly at all, barely wanting to eat, she just laid around and slept all day- naked. This was partly because the swelling was so uncomfortable clothes didn't feel good on her body, and partly because most of her clothes didn't fit at all. This went on for a week. They first thought it was a bad reaction to the antibiotic, then allergies, then a UTI. Finally her doctor wanted her to come back in ( as I was on the phone explaining to the nurse how it did NOT seem like a UTI and she was so swollen she couldn't wear her clothes...I was not going to hang up until I had a better explaination).

 Once there,we were finally able to get a tiny urine sample- a tiny sample that revealed 3000++ levels of protein in her urine! Well, finally someone confirmed that deep motherly intuition that something was NOT right with my child. She was also 6 lb heavier than the week prior, due to water weight and pitting edema. From their we headed to The Children's Hospital at Egelston, in Atlanta. We were their 3 nights and learned about her diagnosis: nephrotic syndrome (ns).

Ns itself is not a disease but is what happens when the kidneys spill protein into the urine ( instead of the blood) thus causing great swelling, lack of energy and urine out put, and can potentially lead to blood clots and very serious conditions such as kidney failure if not treated properly. It is most common in kids, however, they don't know exactly what causes it and there is NO CURE. Yet. On the up side, most kids outgrow it by their teens. Their are two types: minimal change ( what Emma Kate has), and FSGS which is far more serious and often ends with a transplant. 80% of kids have the minimal change and do respond well to treatment. The standard treatment is steroids, (prednisone) often in combination with diuretics. All people respond differently, but Emma Kate had a great response and by the time we left the hospital she was back to her normal size and looking like herself. Which was the best feeling in the world!

 Within one week she had no protein spilling ;). After three LONG months on the med she was able to come off. We were all excited because we knew the SWEET Emma we used to always see would be back. Steroids have many, many side effects. In toddlers it's mostly behavioral. Yes, because they have such amazing temperaments already :). For about 1 month she had temper tantrums ALL day LONG!!! We never knew what would set her off..kicking, screaming, hitting, crying... It was awful. I soon realized certain things, like red and blue food dyes made the behavior FAR worse. Needless to say, we avoided them. I began fiercely searching the internet for natural ways to treat ns. I came across many food related things, which I'll talk about under " What To Eat?!" Unfortunately, before I could get much figured out, 6 weeks off the med she relapsed and we were forced to go back on the much dreaded steroids. However, I insisted on a lower dose and other than the first day we see no behavioral effects from the med this time ( praise God!). So that's where we are now. She only has two more doses until were off again. Hopefully for a LONG time!