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