When Emma Kate was almost 3, we noticed her swelling. Then, she ended up getting sick for days, not eating, or going to the bathroom. Thankfully, her doctor was attentive to what I told her, and she called us back in, somehow managing to obtain a tiny urine sample. The sample revealed a protein spill of over 3,000 with pitting edema.
We headed straight to the children’s hospital. The next several days were without a doubt some of the hardest in our life. We learned about Nephrotic Syndrome, its mysteries, and unknowns. We were fortunate to see her respond to steroids and go home. However, every six weeks, she would start to spill again. It was so up and down that her doctor mentioned putting her on something year-round to prevent a relapse. As her mom, I was very against this, as I just wanted her healthy and off medications. I began to search and try everything natural I could to “cure” her when she spilled—and a couple of times, it worked!
We started to intensely heal her gut and remove all allergenic foods from her diet. After about six months, we added them all back in except gluten, and she has been in complete med-free remission since! And that was over 12 years ago!
That’s when our story turns to hope. Along my journey of researching, we decided to try a gluten-free and dairy-free diet. She never had any allergies before she got sick that I was aware of, but once your body is inflamed, it can react to anything. I knew it would be a life change to alter her diet like that, so I opted for delayed allergy stool testing. She reacted to all four categories (eggs, wheat/gluten, dairy, and soy). She was on steroids at the time, and they said it might show no reaction, but it did. We were shocked to see her gluten was over 350, when the normal range is less than 10! We started to intensely heal her gut and remove all allergenic foods from her diet. After about six months, we added them all back in except gluten, and she has been in complete med-free remission since! And that was over 12 years ago!
Emma Kate is approaching her 15th birthday and has sustained complete remission without the use of medication throughout these years. Additionally, she continues to adhere to a strict gluten-free diet. I know our story is so different than many others. I know we are beyond blessed. I hope it will encourage others to explore other options, though, and maybe find the trigger. If not, then perhaps reduce the amount of inflammation going on. Don’t give up! There are many natural treatments found through diet change and supplements. It does not work for everyone, but you never know until you try!