The doctor mentioned that Tula could experience "a die-off" from the anti-fungal as the candida (yeast cells) release their toxins (including acetaldehyde and ethanol) into the body as they perish. This is also called a Herxheimer reaction. Tula was already in a permanent state of “fog," seemingly almost drunk, so how bad could the die-off be? We found out how much worse Tula could feel approximately one week from initiating the anti-fungal. We all noticed her behaviors becoming worse—tantrums, overstimulation, anxiety. It was so hard to handle but I was hopeful that the treatment might be working. One particularly hard day she was so irrational and had been hysterical for quite some time and had boogers all over her face. I went to wipe them off with a tissue and threw it away. She was so out of control that she ran to the trash, still screaming, dug out the tissues, and wiped the boogers back on her face! I can laugh about it now but at the time I didn't find it funny at all. This taxing period lasted a little over a week. Some of her behaviors did upturn slightly after the die-off, but still no huge gains. Before we knew it, another month had passed and we were frustrated to find that even after doubling the supplements, the next set of lab results still showed no change to any of her levels. What was going on? So much time, energy, and money—was buying all of these supplements a complete waste?
We stayed the course and the doctor recommended we add B12 shots at night. We stealthily sneaked into Tula's room with a flashlight, hands trembling, praying to God she wouldn’t wake up in the middle of the shot and be traumatized for life. She never woke up, but her behaviors became so much worse after we started the shots that they needed to be discontinued (I have read that some kids do really well with B12 shots but not the case for Tula).
Our doctor had referred us to one of the top allergists in the next state. He told us she understood the real reasons behind allergies. With a 2 ½ hour drive, we were hopeful to obtain some answers, since we were now at a loss. Before the testing, she asked me many questions about her diet. I confidently told her that she was on a gluten and casein free diet. She then asked how I cooked and which flours I used. Umm...what? What does flour have to do with anything? I stumbled for a while, since I did not cook at all and had not one bag of flour in my kitchen. I felt guilty all of a sudden admitting that we purchased all of our foods pre-packaged, but they were all GF/CF. After Tula was poked in her arm yet again, the doctor returned to tell us that all the allergies they tested for came back negative. She recommended staying on the GF/CF diet and gave us another probiotic. I wanted to yell, "But we ARE on a probiotic already and we ARE doing this diet!" Yet, out of this visit, one thing stuck. This whole cooking idea stayed in my brain—what if there was something to it?
It had been one year since I’d kicked Mike out of the house on the horrific day of December 17th. Now, a year later to the day, the phone rang and it was Mike calling from work saying, “I was just laid off.” I couldn’t control my emotions, as I sobbed into the phone. We spent so much money on this new diet, supplements, and doctor appointments. How would this work? I was terrified. But not only did it save our relationship by getting separated one year ago on the previous detestable December 17th, this layoff, too, would become a blessing in so many ways. It just didn’t feel like it in the moment, or while standing in the welfare line for food assistance. If only I knew that the universe had a plan for us.
© Copyright A Journey Off the Spectrum 2021
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