Sunday, February 2, 2014

One Year of Full Remission! (With Video)

365 Days.

No Protein Spill. No Meds.

Praise God!!!

What a wonderful day! To celebrate one year of FULL REMISSION! Changing your diet and changing your life can be hard. Mostly though, it's inconvenient....and people do not like to be inconvenienced. However, I think the momentary inconvenience pales in comparison to the lifetime of better health one receives. I know everyone may not have the same success with life change as we have had. I do know this though, IT WILL AT LEAST HELP EVERYONE who gives it 100%. How could eating and living better Not help? That's the catch though- most people are only willing to try "a little". I know from experience that trying to go gluten free even "mostly" is not enough to cut it. It has to be 100%! I talk to people all the time with different autoimmune problems, who want to know what we did. As soon as I give them the scoop on diet change, they lose hope. I can see on their face they think it's not for them, because it seems like too much work. But anything in life worth having, is worth fighting for, and your health should be at the top of the list! It can be upsetting how many people I meet that just want a quick, easy solution. The body is so complex, nothing about it is simple. It takes time, energy, sacrifice, research, and patience to try and figure out what may work for you. And my heart aches for those who DO put in the effort with little results. But, you never know what may or may not help you until you try. So be brave! Give better health a shot, you are worth it!
Below is our story of encouragement. I made the video because when Emma Kate was first diagnosed I did what many parents do...I looked up things about it on the web. And I looked at youTube videos. And EVERYTHING I saw was so sad and very discouraging. I wanted to see a story with a happy ending. A story that did not end in a transplant or years upon years of high dose meds with serious side effects. Don't get me wrong, I know that is a reality for many kidney patients. But my heart needed something to give me hope. Something that said it is not always that way. And I am overjoyed to be able to have made that type of video myself. That is the purpose behind it; to lift spirits by presenting a different approach to treating NS or FSGS. May you be inspired and able to make your own encouraging video one day! That is my prayer! (For some reason the video is not showing up on mobile devices, but will work from a regular computer.)
We just celebrated Emma Kate's 5th birthday, and we took her to Disney World! We all had a blast! I am so excited to say that WDW was SO wonderful about food allergies! Every place we ate had gluten free options. And not only that but it was SO GOOD! They were super nice about making sure you were taken care of and that was fantastic. We were also able to bring our own food into the park, and that was wonderful.

"Let us not become weary in good doing;

for at the proper time we will reap a harvest if we do not give up."

Gal 6:9

Saturday, December 28, 2013

It's a Wonderful Life

"She Is Clothed With Strength & Dignity and Laughs Without Fear of the Future."

Proverbs 31:25
This day has seemed so long awaited...ONE YEAR! From the day Emma Kate was diagnosed with nephrotic syndrome, I have looked forward to the day she could celebrate a year free of relapses, and free of medicine. The actual day is January 23. That was when we ended her last dose of steroids, and she has had negative urine every day since. Even through colds, fevers, antibiotics, and sickness.
 It was this time last year that she was right in the middle of a relapse. It was then we made the decision to go 100% gluten free and dairy free. We had already cut out "most" of those foods. As I soon learned though, "most" doesn't cut it. That ended up being one of the best decisions we ever made! It was life changing in more than one way, but so well worth the time, effort, and sacrifices.
Emma Kate is now doing so well that her nephrologist said he does not even need to see her back for another year! Quite different from her previous appointment when he spoke of putting her on a medicine year round, to help prevent relapses. :(
Emma Kate with her fun Doctor, Dr. Greenbaum
This was the happiest visit we ever had with him... All good news!

This is my most favorite supplement. This is what we added this past year, along with Ultra Care for Kids. You just add the powder to a drink (we use chocolate almond milk), mix it well, and you can't even taste it.                                             Why I love it...It's the only supplement, other than pro-biotics, that has actually regulated her bowel movements. If we skip too many days, and she gets constipated, I just give a big dose of this powder and she will be sure to go! It helps to restore the lining of the gut, and having a good strong gut is vital to having good health. I feel pretty strong that this supplement is partly to credit for our stellar year. It can be ordered on amazon. I give Emma Kate a 1/2 scoop every 2-3 days.

Other than that, in new news Emma Kate failed her pre-K eye exam and had to get glasses! We were very surprised, but she has done amazing. And of course, she rocks them...
I am still having to get used to seeing them on her though! Ha!
I can't believe we are about to be celebrating this sweet girl's 5th birthday! It has been almost 2 years now since Emma Kate was diagnosed.

We are now to the point, that most days I forget to test her urine. And I think that is a good thing.

It's a brief update, but I'm very thankful it is! We are so blessed and still thank God every step of the way. It has been one terrific year and we look forward to many, many more!

It's a Wonderful Life!!!


Thursday, April 25, 2013

The Gluten CRAZE...

Gluten Free! What's the Deal??

Fresh baked bread, warm from the oven, coated with butter and melt in your mouth good! Who doesn't like delicious bread?! Grains and bread have been considered staple foods for years and years. Our great grand parents ate bread, and our grand parents, and our parents... So why now, all of a sudden do you hear it's BAD for you? How could that be? Is it just another fad diet? You constantly hear about people going GLUTEN FREE but maybe you don't even know what gluten is. Well, let me put it in a nut shell for you:


A gluten-free diet is a diet that excludes the protein gluten. Gluten is found in grains such as wheat, barley, rye and triticale (a cross between wheat and rye). Oats are often excluded too, because they are contaminated.
That doesn't seem too bad until you consider that gluten, and or wheat, are added ingredients to the vast majority of foods in the average persons pantry. And certainly in foods you eat out. So we know what it is, and that it is in almost everything, but why is gluten free becoming such a big deal? Short answer, because it is not the same grains your great grandparents ate. Many people simply have problems with it because the wheat has been altered so much from the way God designed it, and people eat it ALL the time (unknowingly). The text below talks about the increase in the number of people with celiac disease from over 60 years ago, compared to now. People with celiac disease cannot eat gluten at all with out harming their body:
In a novel study, researchers at the Mayo Clinic tested blood samples taken from 9,133 young Air Force recruits in the 1950s and found that about 1 in 700 had undiagnosed celiac disease at that time. Tests on subjects exactly the same age now found that the rate was nearly five times as high today.
"Human genes haven't changed that much, so there has to be something pervasive in the environment that is making this disease more common," says Joseph Murray, a Mayo gastroenterologist who led the study, published in the journal Gastroenterology last year. It may be that people are more susceptible because we are eating much more wheat today—or that wheat is being processed or cultivated differently.
This information taken from
"Modern wheat not only differs from older strains genetically, it is also processed and eaten in dramatically different ways.  Due to the emphasis of the commercial grain industry on surplus production, much of cereal grain is stored for up to a year onsite before it is milled and likely stored again for lengthy periods in flour form.  Furthermore, grain silos are prone to pest infestation and mold.  For this reason they are routinely treated with antifungal agents and industrial pesticides."
The genetic change "strong woman" is talking about is the chromosomes. Wheat used to have 24 chromosomes, and now has 42. It was originally tall and is now shorter and more stout. Very interesting!
Now you know the difference. What we haven't talked about yet is how going gluten free is quite literally changing some people's lives. In particular, people with autoimmune disease. Autoimmune means your body is attacking itself and tends to OVER respond to things. The immune system is hyper sensitive. That is why often times a disease will "flare up" during times of stress or illness. Gluten is known to cause inflammation. Autoimmune thrives on inflammation, therefore it makes sense that cutting it out of ones diet would help "calm" the body. It sort of goes back to "you are what you eat". If you eat fatty foods all the time you are likely to get clogged arteries, if you eat "inflammatory foods" you are likely become inflamed. If you are not too sure, just google "gluten and autoimmune" and you will be enlightened :).

Here is a list of some of the problems a "gluten sensitive" person may have (however, you could have no noticeable symptom like Emma Kate, which does not mean it is not damaging your body):

  • Weight loss or weight gain
  • Nutritional deficiencies due to malabsorption e.g. low iron levels
  • Gastro-intestinal problems (bloating, pain, gas, constipation, diarrhea)
  • Fat in the stools (due to poor digestion)
  • Aching joints
  • Depression
  • Eczema
  • Head aches
  • Exhaustion
  • Irritability and behavioural changes
  • Infertility, irregular menstrual cycle and miscarriage
  • Cramps, tingling and numbness
  • Slow infant and child growth
  • Decline in dental health
  • "Undiagnosed for long periods of time, food intolerances have been found to contribute to diabetes, bowel cancer, anemia and osteoporosis." 

    A Turning Point For Us-

    As I mentioned in my last post, we had more testing done on both of my children. We tested for delayed allergies to gluten, dairy, soy, and eggs. Both of my children had a reaction to ALL the food groups   :(. That part was disappointing but honestly not shocking. What was shocking though, was the numbers. Emma Kate was tested while ON steroids and off of dairy for almost a year. Steroids suppress the immune system. They told us that her results would most likely not show as strong as they truly are, but hopefully they would show some. The test works on a number scale. Any number under 10 is considered a normal reaction. Reading the test results is one of those things where I remember exactly where I was sitting and what I was doing...because I was FLOORED by the results. Emma Kate's gluten was 364, ON STEROIDS! Unreal. So of course I had to look back and make sure I was reading it correctly. Sure enough, I saw the number right. The test goes up to 500 I believe, and I think that's probably what her number would have been off meds. Her dairy was 60 while being off it for almost a year, so who knows how high it would have been had she been eating it. My son's gluten reaction was 130, also high. The genetic testing showed my son carries two gluten intolerant genes, and my daughter carries one. That means both my husband and I have at least one gluten intolerant gene.

     I have to say, even my daughter's pediatrician was stunned by her test results. She encouraged us to pursue testing for celiac, however it was too late since we had already changed her diet. The celiac diagnosis would only give Emma Kate more reason to stick with her diet as she gets older. The cure for celiac is to eat gluten free, so we didn't bother.
    Going into this testing I had a simple prayer. That God would make it evident to us if we should take Emma Kate off gluten completely, or not. We had done GF before, but I was not convinced it bothered her, so we let her eat it again. No one would ever wish that diet on a child, especially one who already can't eat dairy and has to watch her sodium. I got a CLEAR answer, but I am so thankful I did.
    So where are we now? In a MUCH better place. I am SO happy and THANKFUL to be able to say Emma Kate has made it through 2 colds and 1 fever with NO PROTEIN SPILL!!! (Since being 100% gluten and dairy free). I give all the glory to God for that. Last year, that did not happen. And honestly, a couple times she would start spilling protein a day or two before we even noticed she was even fighting something. For us gluten free is a way of life. I praise God that my daughter is able to eat a special diet that has helped her stay well. So that's the BIG deal. There are SO many people with stories about going into full or partial remission of a disease by going gluten and dairy free. For us cutting back on gluten did nothing, cutting OUT gluten did everything. If you are suffering from some type of chronic condition or autoimmune disease, just TRY it. It couldn't hurt. Obviously everyone will not have miraculous results going gluten free, however, you don't know until you try.

    What difference did it make for me? ENERGY!!!!!!! Wow, I thought being tired and easily worn out was just a mom thing. Seriously. Chasing around a 20 month old and 4 year old wears you out, right?! Well, to my GREAT SURPRISE (shock actually) I realized one day that I had energy like NEVER before when eating gluten free. I used to take my kids on about 2 errands and then be done. The grocery store, target, unloading at home....wore me out. When I have been entirely gluten free for two weeks I can do 12 errands and still come home and cook dinner. Amazing?? Yes. I had no idea how little energy I had until I went gf. And I would never say something like that just to get people to like gluten free. In fact, I had read about people "getting more energy" from gf and I sort of thought they were making it up. Turns out it's real. And I am so happy to have realized it!
    In conclusion, the reason you are hearing so much about gluten free and noticing companies and stores making efforts to change there products, is because they are realizing it is not just a fad. Of course you always have people who will try it "just because", but it really is making people feel better, healing some, and giving them more energy. Just to clarify, there is a great percentage of the population that is not bothered by gluten at all. And there are others who( like us ) think it is not a problem, when it really is. Companies have recognized the need for gluten free options and labels and are working hard to accommodate. As for Emma Kate, she is doing wonderfully and embraces her gf, df diet with open arms. God bless my sweet girl!

     "I have told you these things, so that in me you may have peace. In the world you will have trouble. But take heart! I have overcome the world."

    John 16:33



    Monday, December 17, 2012

    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?? ;-)
    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.
    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!
    Video Links:
     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!!!!!!!

    Friday, October 26, 2012

    Two Weeks of Spilling- Still Med Free!

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

    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


    *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 :-)

    Wednesday, October 24, 2012

    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.