I cannot tell you how many times in moments of reflection I have wondered if at some point I simply just lost my mind when we created project elimination. In my moments of reflection I wonder if the leap was about denial, or instinct or simply more of an intuitive move on our part. Whatever triggered Project Elimination I am grateful.
"Baseline". Abby's baseline has slowly improved. After each flare in symptoms instead of losing ground she has shown the slightest but consistent gains in her baseline.
"Flares" Before project elimination not only were periods of flares much longer(1-3 months going down)they were destructive and caused her baseline to erode. Now, she will flare for a few days and with rest comes back nicely to her slowly improving baseline.
"Secondary issues" The kidneys seem to reflect each flare. When she is not in a flare her kidneys are working well with little to no proteinuria. Through food journaling we have found a clear connection between what Abby eats and the function of her kidneys. Safflower oil sent her kidneys into a tailspin that took a couple weeks to figure out that the tiny bit she was getting in the store bought rice milk was causing the reactions. Remove safflower oil from her diet and her kidneys quit throwing protein in 24hrs. Her muscle tone hasn't increased much but she hasn't lost anymore. Her scoliosis/kyphosis has gotten no worse and when she is not in a flare or tired her kyphosis is not noticeable. Her toenails that freaked us out so badly for stopping and starting with growth are now growing at a shocking speed. Her hair is growing back in at a good pace. Her GI issues can be controlled by diet changes as needed for the most part. Though food continues to be a daily focus and needs constant changes as new GI symptoms occur. However, any GI issue she has had we have been able to resolve quickly with simply a change in her diet. Grateful to say, since starting Project elimination she hasn't ever been unable to eat. There is always something that is safe and won't cause her pain or secondary issues. Admittedly, the GI seems to be the core issue of focus still, but no major shutdowns.
Immune: Before she was not getting colds or if she was she was so sick you could not tell. We teasingly say she is going through the newborn stage again. She seems to catch every cold that comes near her. Despite it being annoying, she fights them off in record time and no secondary infections.
With Abby I think we were dealing with a whole bunch of issues that all contributed to the perfect storm. Food allergies, myopathy(depletion), mast issues, poor nutrition- all of them were contributing to a big unique mess. I still think that there was a "cause" for everything and it was not the depletion but still don't have any proof. For this year at least, the Depletion stays with her as a lead contributor.
A year later, I still am undecided as to what to blame. But I am confident that the radical changes in nutrition and environment are the ONLY treatments that have allowed Abby to not only stabilize but to slowly improve her baseline.
Admittedly, I have days where I am frustrated that her health is not improving fast enough. I am TERRIFIED we will do something that will cause her gains to disappear. I wonder too often in the back of my head whether her improvement is a "fluke" and would have happened anyway despite our efforts.
Fact: she is better.
Fact: She has a very long way to go.
Fact: Nutrition counts for Abby
Fact: Reducing stress(colds,flus, emotional stress, physical fatigue)has helped as much as the nutrition changes.
FACT: Though we have seen great improvement and speculate more coming, we still are not confident this is a "cure." Allergen removal seemed key when she was a toddler, and proven key again. We see the changes we have implemented as a "treatment" for now.
Fact: Abby is unique. :-)
Besides Abby's health improvements Project Elimination has gifted our family time and time again. We prioritize each other first. We all acknowledge that food can and should be the first treatment for any disease. Our priorities have changed.
We speculate that in one more year we will be reporting more improvement with Abby. This is a huge and time consuming method to stabilizing Abby, but not only are we ready for it, but after seeing the gains the first year, we are ready to tackle year two with more energy then ever.
To recap what we did this year:
Removed allergens. (corn,dairy,soy,seeds and nuts,gluten,shellfish are the absolutes,she also reacts to red meats,various fats and a long list of other odd items that we aren't sure whether they are a "trigger" or an "allergen")
Removed chemicals. (No preservatives, no PEG! No food colors, no additives,no MSG, no hormones or medications, - clean and single ingredient or not at all.)
Removed High Histamine(we worked through the list and removed most, though a few like lemon and coconut yogurt and the smallest amounts of Braggs ACV we allow since she has not reacted when used in moderation.)
Focused on rest(she sleeps at will. She decides whether she is up to leaving the house)
Climate Control. (steady temperature between 70-72 degrees. She shows stress below or above. We also maintain humidity levels -not too high, not too low.)
Removed any medication,vitamin, or supplement(we finally found a compound pharmacy that was able to create a clean diuretic which she has used as needed. We found one vitamin D oil that she rubs on her skin, we don't trust it by mouth yet. Fortified foods use synthetic vitamins that are corn contaminated. Supplements that would be recommended for her various health issues are also all corn contaminated or contaminated with other allergens for Abby. So far based on bloodwork, her nutrition levels have done nothing but improve once all that junk that was suppose to help was removed. We speculate the issue was that corn is in all of it, but still wonder whether "synthetic" was part of the issue as well)
One of the biggest benefits to this process is that I have found we are not alone. There are many many patients with Mast, Mito,autism and other chronic health issues who have also found that "you are what you eat." They have noticed everything from stabilizing to miraculous improvements when eating a proper and clean diet. Our population of patients who have found that the Western Diet(corn,chemicals crap CCC diet) makes us or our children sick, or at least unable to heal is a growing population.
Right now, it seems eating this way is only recommended when "all else fails". I hope soon it will be recommended first, then medications and medical interventions will become the "all else fails method." If even 3 out of 100 patients can heal,gain relief or stabilize using nutrition first, it should be recommended as a potential treatment to all patients.