We went to Austin, Texas in July to visit a dietician who specializes in autoimmunity, so this blog post has only been in my head for about 3.5 months. Probably it has simmered long enough.
We had hemmed and hawed about going to the clinic. The final blow was not that Toodle continued to lose her hair, but rather the eczema covering about 85% of her body. Warm summer months were around the corner, but extreme temperatures and humidity aggravated Toodle’s eczema so much so she had to stay indoors most of the summer. Poor kidlet. The eczema on the backs of her knees had turned her legs a deep shade of purple, as though sunburned, and her skin also vacillated between weeping and bleeding.
We had been doing all the “usual” stuff – homemade lotions (which did abate her symptoms somewhat), putting her in light layers, and keeping the AC on high. But, to quote Ghostbusters, “All right. Okay, the usual stuff isn’t working.” And I knew Bill Murray was right. There was no way we could send her to kindergarten in the fall covered in eczema that itched and bled and blistered.
So we filled out extensive paperwork and got in to see the dietician who could schedule us within the month. Um, yes, we’ll be there. Done.
During that time, Toodle continued to lose her hair, including eyebrows and some eyelashes. Her weight was still stagnant, and she was feeling extremely moody. Fully-body eczema? Can’t imagine why she would be moody. We kind of forgot about her hair, and even her food allergies seemed to take a back seat.
I still try to wrap my head around what it must be like to be five years old and manage alopecia, food allergies, and eczema, of which all are autoimmune responses. I wouldn’t do well, as evidenced by the number of Doritos, Dutch letters, and donuts that have at some point over the last 18 months been stashed away in my closet. Not to mention, the Costco muffins that are the size of my head.
I digress. I also just took a break to sneak a bite of Costco muffin while the kids are resting during quiet time. I will say, though, that I can no longer eat chips like I used to. I have read about people who start eating well and soon can no longer eat the junk food to which they were once accustomed. I am slowly falling into that category. Slowly.
I mentioned the paperwork was extensive, and I wasn’t joking. The clinic wanted to know about my pregnancy with Toodle, how she was delivered, whether I was Rh-negative and group B strep positive (yes and yes), and any illnesses she has had. They also wanted to know about our families’ health histories and Toodle’s emotional health. Although I was able to fill everything out, I had never looked at the information in that light before. Once I did, I saw a seemingly innocuous pattern of health that could easily lead to the problems she was experiencing. I also began to wonder how many other people in the world were unknowingly on the same path.
When we got to the clinic, I knew we were in good hands. I could just feel it. It was absolutely beautiful, and I didn’t take a single picture of it. And the staff! Omigosh, the nurse and dietician, I just cannot even with them. So cool. So sweet. So reassuring. After meeting Toodle and doing an initial patient check-in, the dietician and I did the consultation while K-Hubs took the girls around the complex. So not only was clinic beautiful but the people running it were able to accommodate a busy family of four, understanding the realities of having a 5-year-old patient. Toodle wouldn’t sit there indefinitely. And they didn’t expect her to.
I may have cried in the dietician’s office, telling her, “I’ll do anything you tell me to do. I don’t know how to care for my child. Things are wrong, but I don’t know what they are.” She confessed she had never worked with someone with alopecia, but she pointed out that because alopecia is an autoimmune disease, the problem is most likely in the gut rather than the scalp or hair follicle. As such, they would likely be able to help us. Makes perfect sense to me.
We fit the stereotypically functional medicine patient. We tried traditional medicine with traditional doctors and traditional treatments. Nothing worked. In fact, Toodle’s symptoms got worse, and the medicines to make her feel better actually made her sicker. Go figure. There just aren’t easy solutions for autoimmunity, and patients aren’t given a lot of hope. I just could not rest. It was nice to meet a dietician who specialized in autoimmunity and realize I didn’t have to settle.
Because we had rented a tank, also known as a Ford Expedition, and hotel rooms and packed four thousand cans of bone broth, we decided to make the trip worthwhile. If there was even a remote possibility of needing to run a test, we told the dietician to order it. If there was even a slight chance we would learn something about Toodle, we did it.
We ordered stool and urine tests (which we completed once we got home), a genetic marker test, and tests for histamine intolerance, vitamin D deficiency, bacterial infections, and yeast overgrowth.
We wanted a large rental car for Texas or a smallish rental van. We got a tank instead.
When we got to the lab in the complex, I asked Toodle how she was feeling. “Will I cry, mama?” she asked.
“I don’t know,” I said. “Only you can determine that.”
“I think I will just cry.”
Fair enough.
It took two of us to hold her in place while the phlebotomist drew the blood. At one point the line came out. The phlebotomist wanted to stop and suggested we just go to another lab somewhere around town if their location wasn’t open when we got back around to it.
Mamas, you should have seen the look on my face. There were no words. It wasn’t that I was mad at the phlebotomist. Just kind of panicked that she might stop collecting the samples. While Toodle continued to cry, I mustered, “We. Don’t. Live. Here. Must. Get. All. Blood. Now. Or. Trip. Will. Be. Null. And. Void.” So she asked if I was okay with her sticking my child again. I said, “I’ll be a good parent in about five minutes. For now, stick her and get everything you need. It is now or never.”
By George, we got the samples we needed. Later someone told me that in that moment I WAS being a good mother. Those were kind words. And it’s true that sometimes, many times, being a good parent means doing hard things. We are so proud of this kid. Toodle has managed her health better than most people we know. She just kind of leaves us speechless most of the time.
She was amazing!
The dietician and nurse were simply amazing. The dietician did a phenomenal job of deciphering in the moment what tests were worth doing. The nurse did a wonderful job of helping me understand how to do the at-home kits (urine and stool to be done once we got back home and mailed directly to a lab). I may have left the kids with K-Hubs and followed her back into the clinic for a quick rundown on how to do the at-home tests. And then when I still didn’t get it, she explained it again. I may have also said, “You know, the kids are with K-Hubs right now. I have myself all to myself! This never happens. How about you explain it one more time, and talk slowly.” The nurse complied. That clinic? So my people. They just totally got it.
K-Hubs ended up helping Toodle complete most of the labs, not because I minded scooping poop, but because there were special mailing instructions. All the items had to be reassembled in a certain order or we ran the risk of altering the effectiveness of the labs or some such thing. Omigod, no. I’ll scoop the poop any day of the week. DO NOT MAKE ME HANDLE PACKAGES WITH SPECIFIC RESULTS-ORIENTED OUTCOMES THAT BECOME INVALID IF REPACKAGED INCORRECTLY. I cannot. So I didn’t. K-Hubs did. We sat in the bathroom collecting “data” for K-Hubs to mail to the labs. Livin’ the dream, we were.
Single friends once asked me what they should look for in a potential mate. I said, “You have to find someone with whom you can talk about poop and sex. If you can talk honestly about those two things, you will probably be just fine.” I stand by my advice.
Back at the clinic, we happened to be the only patients that afternoon, which was super awesome for the girls. We got amazing care, and they got the clinic to themselves. Also, did I mention the nurse explained the at-hone labs for me about three times? I did? Well, let me do it again for good measure. She patiently explained the at-home test kits to me without breaking a sweat.
We are totally biased, of course, but we feel like the clinic kind of saved our family. They are rational, practical, sensitive, kind-hearted women and men. Nothing suggested to us as a means for treatment was out in left field. It all made sense and was tailored to Toodle’s situation. I admit, I kind of didn’t want to leave. Aqua walls (if I remember correctly) and a white leather couch, be still my heart. The chi was amazing in there. From their recommendations, we have overhauled our lifestyle again. But it has been so worth it. In my next post, I’ll share what we learned from the tests and how we have responded.
Spirited and then Some 