Sunday, March 8, 2015

Two Years Now, Full Remission!


"Broken Crayons Still Color...Live in the Present & Make it BEAUTIFUL!"


As I sit outside on this beautiful day, I am reminded of God's grace. Grace, "the free and unmerited favor or help of God." To see my daughter ride her bike with no care in the world. To be able to buy her clothes and know they will fit because swelling is not a concern. To be able to eat food and not worry if it has salt in it. To not panic each time her nose gets sniffly. These things are all blessings to us, blessings most people would never even think to thank God for, that is, unless your child was told they had nephrotic syndrome. And you were told they may never be off steroids and their childhood could easily consist of multiple hospital visits, along with daily concerns about blood pressure, clots, swelling, and scarring.

 So today, I sit here soaking in God's grace and mercy with overflowing thankfulness for Emma Kate's good health. A day I remember longing for a couple years ago. I watched her stroll across the drive way on her bike, looking less like herself because she was swelling and we were fighting a protein spill. However hard those days were, God was still there, leading me. The tears streaming down my face, He saw every one. God's mercy can show itself in a number of ways, and during that time God's mercy was given to me in the form of guidance. I could not see it at the time, but I knew God was there and I just kept trusting. After all, what other choice did I have? So to sit where I am today is such an amazing place to be...it is hard to even put it into words. It has now been TWO full years of remission and ZERO meds! Emma Kate recently celebrated her sixth birthday, and is as healthy as ever! We are truly blessed, but most importantly we know it and humbly give ALL the glory to God.

"Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in time of need." Hebrews 4:16



One thing that is very clear to me now, is that God had a plan for our journey. His plan was to use us to encourage others and give hope that maybe steroids are not the only solution. Doctors can be so negative and the internet is even worse. After her diagnosis I remember searching the web for hours at a time to find ONE story of HOPE. Everything was so sad and negative. And understandably so. But I craved to find just one story I could cling to that people found an alternative solution. Now, by the grace of God, that is exactly what this blog has turned into.  I am reminded of the verse "For I know the plans I have for you declares The Lord, plans to prosper you and not to harm you, plans to give you a hope and a future." Jer. 29:11 It is so hard for us sometimes because we live in the moment. It's easy to forget God knows exactly where you will be 10 years from now. He knows the number of hairs on your head. He has a plan for us, and if we trust Him, each step by step He will be faithful to lead us. Though it may not always be in the way we anticipated.

In the past 8 months I have been through some personal trials that have reminded me, that when we do not understand, we still have to trust in God's greater plan. And God has been gracious to give me verses to cling to as I wait on Him. And He reminds me of how He has brought me through time and time again. We can't always see it with our human eyes, but GOD IS FAITHFUL.

When we were in those dark days I never allowed my self to think in terms of "why" or "this is not fair", and I still don't. My dad taught me a hard truth early on that "life's not fair." It stinks, but some times that unfairness works out in your favor! Just like this blog. The changes we have made will not work for everyone, some kids will still end up needing a transplant. However, it just may change a life. And more importantly, it may help someone to find peace and learn to trust God. All I do know is this is what God wants me to be doing, so I am.

I am daily amazed how many people this blog has reached. I remember when I first started it, I thought maybe 5 people would come across it. Well, over 130,000 people have come across it! Considering the specifics of this blog, that number blows my mind! I have gotten personal email from people in Jamaica, India, England, Canada, U.K. and the U.S. I love being able to encourage others and answer questions about diet. It is truly the work of God and I feel blessed to be His vessel!




Emma Kate:

The only recent news with her is that for the first time in two years (that I am aware ) she actually did have some protein show up in her urine. She is getting older and approaching the age that she goes to play with friends with out me there. Well, at a friend's house she accidentally ate something she thought was gluten free. She is generally very cautious about her diet, so we had to have a talk about that! She ended up having about a 30 on the dipstick the next day. The day after that it was trace, and a day later it was back to negative. I was disappointed that so little did cause some spilling, however, it did confirm that we are certainly doing the right thing by keeping her on a strict gluten free diet!


25 comments:

  1. Could you please share the details of your daughter's diet? I am also trying to switch to a gluten-free diet for my 2 year old (he's had 3 relapses already since being diagnosed with nephrotic syndrome last summer). Is she still taking the supplements and the tea? Any advice would be much appreciated. Thank you so much.

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    1. Hi! Now that she has been in a long remission she generally just gets vitamins, prp spray, probiotics, and the immuno g powder on occasion. Right now we are just gluten free, we limit dairy, eat non-gmo and organic as much as possible too. When we first began she was gf, dairy free, mostly soy free, green dye free, limited white rice, and peanut free. That was bc of the test results showings her food reactions. As her gut healed though, I realized the main culprit was gluten and she can tollerate the other foods now with now problem! Hope that helps!

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  3. Hai, i would like to say thanks a lot for sharing your beautiful daughter'journey of NS. I have a 4 yo son who has NS since he was 3.5 yo, when i search internet about this disease i thankful God for make me find your blog, i got so many many lesson and info about how to treat NS and it is very usefull and follow your way to treat my lovely son and thank God he is in remission for 8 month since the first time he was diagnosed, never relapsed even he was in flu or cough. Thank you so much once again, may God always give healthiness for children who still fight this disease

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    1. Thank you so much!! I love that if nothing else, our story has helped to encourage others. I hope your child will continue to do well!

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  4. Hi there, may I know which Vitamin C would you recommend from Amazon store. You did mention All natural vitamin C ( from target gummies) which i couldnt find from the store. I am also looking into gettting a good vit B complex too

    My son is 6 years of age and steroid dependent

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    1. Hi, I'm so sorry my response has taken so long! I use vitamin c gummies from target, also animal parade zinc (which I believe is a form of vitamin c).

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  5. I just wanted to write and say thank-you for creating this page. In December of 2013 my 5 year old girl was diagnosed with nephrotic syndrome. She was admitted to the hospital where they helped to get rid of the 10 lbs of fluid she had gained. She was on a very high dose of steroids for 8 weeks and was also taking medication for high blood pressure with no response to the steroids. Her doctor talked to us about introducing another medication. I felt helpless and searched the internet for another option. Like you, I spent hours looking for a story that would give us hope and came across your story. We took her to a naturopath, eliminated gluten and dairy from her diet and started juicing, adding the apple cider vinegar. I also ordered some of the supplements you suggested. She slowly started to improve and by May she had achieved full remission and has not had a relapse since.

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  6. That is SO wonderful!! I am so happy to hear that. Thank you so much for sharing, I hope she is continuing to do well!

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  7. Hi, I hope your daughter stays well. My daughter, she is now 10 years old has nephrotic syndrome as well. I want to introduce a free mobile app to keep proteinuria
    and relapses record. http://nephroticsyndromeapp.com/

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  8. Hi,
    First of all your daughter is adorable! Second I am so disappointed that I'm just now finding your blog, as we've had such a parallel journey.
    In January of 2012 my 4.5 year old son presented with his first episode of NS. I thought he was constipated (bloating). He had put on 10 lbs in a week. I was blessed by 3 things: 1) our pediatric doctor had just finished a fellowship in nephrology at the University of MN Children's Hospital so treatment and diagnosis were swift, 2) myself being a nurse, our MD was comfortable with us home hospitalizing him, and 3) our insurance had just changed over 4 days earlier (Happy New Year?)
    He relapsed twice and was started on Cellcept for 18 months, off for 5 months, relapsed twice again and started on cellcept for 15 months. He has now been off all meds for 7 months! Unfortunately, this past week he has started spilling again thus sparking my blog search that I had so long ago given up on. I'm going to try the Raw Apple Cider Vinegar in the morning with him.
    Our dietary journey began by cutting out anything with food dye, highly processed or processed sugars, and trying more organic (which as you know is costly and time consuming.) Also, boosting his immune system with probiotics, vit c, vit d, calcium, and fish oil. Being from the north a majority of his relapses have occurred during the winter cold and flu season. Has your daughter ever taken anything other than steroids? and how many times did she need to be put on steroids in 1 year? The side effects of Prednisone are so aweful! I've worked so hard over the past few years to change our food habits into a healthier life style... based off of my sons illness,but benefiting the entire family! It's great to see someone else who has found such a successful path.
    I'll be sending prayers that Emma Kate remains in good health and grows out of the NS!

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  9. Hi, I'm so glad you found my blog! It sounds like you have done really well with your son. And what a blessing about the dr and you being a nurse!! My daughter was only ever on steroids but her dr wanted to put her on something year round to prevent relapse. This was right before we went completely gf and did not relapse again. (Praise God!) she was probably on steroids 4 times in a year including the initial 6 mo treatment. Thank you for the prayers! I will be praying for your son as well!

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  10. Hello
    My son, Who will turn 6 in March, has Just been diagnosed with NS.
    We are looking into natural solutions and he is currently on a Gf, Df diet.
    Do you think that foods should be always be labeled "gluten free" ? Are trace amounts of gluten likely to be a problem? What about ghee (clarified butter)? Do you allow chocolate? Do you allow corn? I would be delighted to have recipes from you, is quite difficult to manage his restrictive diet without being repetitive, given his pickiness too .
    My son refuses any Meat /fish (never ever wanted to taste),so he Just relies on eggs as protein source. Hope they will not show up to be a problem :/ So far We have been advised not to test any food intolerance, since he is still on prednisone.
    Any insight is greatly appreciated, I read every bit of your story.php andare found it truly inspiring!

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    1. Did you nephrologist specify dietary restrictions? Ours hasn't mentioned anything, other than low sodium... I'm starting to wonder if we should be following a more strict diet...

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    2. No, my nephrologist was very unfamiliar with any natural approach to treating Ns, including diet. All he suggested was low sodium. I do however know of another doctor in my area who tells his patients to eat gluten free.

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  11. Hi there,

    I've just stumbled upon your blog. My son is 2.5 years old and was dxd with NS just under four weeks ago. We are reeling and riddled with anxiety. I, like you, have spent HOURS on the internet trying to find hope and instead only finding more doom and gloom to fuel the intense anxiety of the future. Thank you for sharing your daughter's story. I'm so glad that she has done so well!!

    XO
    Nicholle

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    1. Thank you so much for posting. I'm so thankful for each person who has come across our story and found some encouragement!!! Best of luck to you all!

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  12. Hello!
    I have a 3 yo little boy who was diagnosed with NS a year ago.
    We did steroids for about 5 months and then did Cell Cept for 6 months.
    I too, felt the urge to try all I could to help my son heal naturally and I found your video on YouTube and all I could do was cry for joy for your daughter and bc I found hope through your story. I know that God allowed me to find your story to help my son. I have some questions for you if you could please help me, I would appreciate it so much. My email is lisavelasco19@gmail.com

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    1. I'm so glad you found our story and hope! That was my initial goal, if nothing else. I'm happy to talk with you further.

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  13. Hi, we have a 3 and a half years old doughter that was diagnosis with NS about 2 and a half years ago, at the age of 1. After several trials and predinisone, cellcept, tacrolimus, rituximab, acthar, we start about 60 days ago a GF diet with a Paleo approach and Dairy Free about 30 days ago. It was the first response our doughter had in the past 30 months comming from a 4,5 P/C ratio average to 0,4 only 10 days after we start the GF diet and maintaining in a level under 2,0 *non nephrotic for at least 45 days (1,8 and 1,4). We remove predinisone at all and tacrolimus was reduced for half dose, and the levels went up a bit to a 3,0 P/C level but getting in to 2,1 and 2,5 first in 3 weeks. We came back with the tacrolimus to a full dose this week and we cut all the grains from her diet that were potential harmless for her gut permeability, as we had beeing connecting the effects of the diets with her gut condition that we believe that in her case is the trigger for the T Cells to do the harm in her kidney. We are supporting some of the major research teams today in NS in the world and you history like ours it's something to go to a next step, where we can start to prove all of this "parents" intuition and create real medical protocols to help the live of many of these children's and other patients that suffer every day with NS. Please, if you fell confortable to share with us first (to be used with our doughter) your experience and then with these doctors that will listen to us once and for all, that this kind of diet are much more related to NS than anybody can imagine. Another clue is an NIH reported publication that has come in June 2016 and has analysed 14 children's with difficult to treat NS and 90% of them had respond at least with a 50% reduction in proteinuria and 40% has entered in to full remission. This data don't proof what we need yet as we don't have a 200 children's trial for evaluation that we will do, and that is to proof for doctors that before they recommend steroids, immunosuppressants and biological medicines, they really need to evaluate all the food allergy factors of each patient and their potential gut permeability, as this is a key factor in NS as we are moving ahead. Please get in contact thru my e-mail mn@gbxcapital.com or my wife's paulagnavajas@gmail.com that we will be very happy to exchange these experiences with you and as it's a God's mission we believe that ours is to spread this message the best way we can transforming these experiences in protocols for many.

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    1. That sounds wonderful about your child! And I agree food has so much more to do with it than most Drs are willing to recognize. I would not mind sharing the details of my story, as I already have :).

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