Archives for category: Alopecia

Yesterday I shared what finally prompted us to visit a specialty clinic out of state. And today I’ll share what we learned. As a recap, we had Toodle tested for:

  • Vitamin D deficiency
  • Candida overgrowth
  • Bacterial infection
  • Genetic mutations
  • Histamine intolerance

And possibly a few other things that were wrapped into the above tests. And oh boy, did we learn ALL THE THINGS. I cannot even with all that we learned. But let me try.

It turns out that Toodle was pretty low on the vitamin D scale. Not technically deficient, but very low. She also had a bacterial infection and a slight excess of yeast overgrowth in her gut. She tested negative for the histamine intolerance.

As for the histamine test, this had two implications. One, we didn’t have to pull more foods that are high in histamines, such as avocados and bananas. Thank goodness, too, because with all her food allergies, there would be nothing left for her to eat except chicken and tree bark.

Two, it meant her eczema was not caused by histamines, which led the dietician to think it may have been related to her bacterial infections and poor gut health. Essentially, her body was overrun with bad bacteria and not enough good bacteria. Although she was eating, it was as though her body was starved for nutrients.

What caused the poor gut health? In my non-medical opinion, probably a host of things, namely the steroids used in the past to treat her eczema as a baby and antibiotics used to treat her recurrent bouts of croup. Essentially, her body never had enough time to rebalance itself before she got sick again with an illness. Interestingly enough, in the scope of modern medicine, there would have been no reason to think she would have any long-term effects from having been sick as a child. The general consensus was she would outgrow these finicky illnesses.

In fact, she didn’t get sick on a frequent basis. But when she did, it was bad. About every six months she would have some horrible virus, a bout of croup, or allergic reaction to something. She also never responded to regular antibiotics. Naturally, the doctors would up the ante with something stronger. We did the same thing whenever we worked with a new doctor. “Oh, yeah, the regular stuff? She dines’t respond to it. You have to give her the strong stuff.” None of us knew what we were doing.

Just visit Austin for the scenery, if you can. This hotel was such a happy, peaceful place.

Just visit Austin for the scenery, if you can. This hotel was such a happy, peaceful place.

This has led me to believe most of us are probably walking around with some kind of autoimmune response/leaky gut, whether we have an autoimmune disease or not, that we don’t fully understand. For example, according to Dr. Amy Myers in her book The Autoimmune Solution, leaky gut is associated with obesity, ADD/ADHD, depression, anxiety, acid reflux, and eczema to name just a few (p. 7). How many people are walking around with leaky gut and a host of health problems, some minor, some severe, that could be corrected if they knew how to get to the root of the problem? Problems can start in early childhood, like they did for Toodle, or in high school, college, or any other time. I’ll revisit this soapbox in a minute.

Toodle also tested positive for the MTHFR genetic mutation. Her mutation is homozygous, meaning both K-Hubs and I have some form of the mutation ourselves and passed it to her. This one is fun times, let me tell you. While some people like K-Hubs and I can have the mutation and few to no negative side effects, others like Toodle can have it and a whole host of problems as a result. Interestingly enough, her version is quite rare, approximately 10-20% of the population have it. But more than 50% of the population can have some variation of it and never know it.

Some people refer to the MTHFR mutation as the Monday/Thursday/Friday mutation. That felt a little boring to me and didn’t aptly describe my feelings on the subject. In our house we have a slightly different nickname for it. Just sound out MTHFR quickly, as though you are playing Mad Gab, and add a “ck” sound in the middle of the F and the R. Did you do it? You now know what we call it. As Mom always used to say, “If you can’t laugh about it then what CAN you do?” So laugh we do.

And here is where I step on my soapbox again. The MTHFR genetic mutation is associated with the following health issues: addiction, Alzheimer’s, anxiety, autism, bipolar disorder, depression, fibromyalgia, heart attack, and the inability to expel toxins from the body. So when we hear the battles between going organic versus not or issues with plastics and other toxins, both sides may be right. For some people, these may never be issues. For others, it may be a bigger deal, especially if their body can’t expel what it doesn’t need. That toxicity can build up in the body to create a whole host of problems. It makes me wonder, again, how many people are walking around with this and don’t realize it. Or how many people are walking around with vitamin deficiencies that are contributing to their lower quality of life and even simple aches and pains. Or how many people, adults included, have some form of a food allergy/sensitivity and don’t know it.

Dr. Myers points out in her book, The Autoimmune Solution, that constant ear infections and acne can be associated with a milk allergy (p. 79-80). Who knew? I didn’t. She also points out that joint and muscle pain can be the result of inflammation either brought on by or treated with the foods we eat (p. 7). I fall in that category. My bursitis is null and void if I stick with whole foods. Again, who knew? Surely not me. I happily grew up on Hot Pockets, mac ’n cheese, and, if we were feeling particularly high brow, Tuna Helper. True as gluten-filled toast.

This is one of many challenges doctors face daily, according to Dr. Myers. If five people come in to a doctor’s office with completely different ailments from an undetected MTHFR genetic mutation, for example, how on God’s green earth would the doctor know to test for that? If a moody child or a hyperactive child (K-Hubs and I have raised both) came into the clinic, how would a doctor know to check for vitamin deficiencies and food allergies? Treatments and prescriptions are created around symptoms, so unless the patient does his or her own research, often families get help for the symptom but no actual cure.

Met to K-Hubs while on our trip, "You could just go home and make that bench for me, right?" Oh, sure, I'll just get right on it., was his standard reply. My request was perfectly reasonable, given that in the same situation, The Gram would have just said, "Okay! You create a distraction while I pull it toward the car."

Me to K-Hubs while in the lobby of one of our hotels, “You could just go home and make that bench for me, right?” Oh, sure, I’ll just get right on it, was his standard reply. My request was perfectly reasonable, given that in the same situation, The Gram would have just said, “Okay! You create a distraction while I pull the bench toward the car and shove it in the trunk.”

So what are we doing about this? Let me tell you. But let me also disclaim that I AM NOT A DOCTOR NOR DO I PLAY ONE ON TV. These are my thoughts and not verified by any medical professional. Here’s the thing, not only should I disclose this, but it is also so important to know that even with similar symptoms people can have completely different underlying causes. Again, let’s revisit Toodle’s eczema. It was not the result of a histamine intolerance. It was mostly likely related to a starvation of good gut bacteria and an overgrowth of bad bacteria. Completely different problems.

If we revisit her alopecia, we can see that it may be the result of poor gut health and bacterial overgrowth. Her hair is growing in healthily but slowly, so only time will tell. For other alopecia sufferers, though, it could be the direct result of food allergies or toxic overload of some kind. That would explain why when I would “copy” a treatment plan suggested by another alopecia sufferer, Toodle never quite had the same success. Two people with alopecia can have completely different reasons for having alopecia. At least this is what has been true for us.

After meeting with the dietician and then bringing her recommendations back to our family physician, who agreed to be Toodle’s primary care physician, we now consume homemade bone broth each day, stronger probiotics and a more concentrated multivitamin (what she had been taking wasn’t strong enough), chewable enzymes to help her break down her food, omega oil, vitamin D drops, and a B complex vitamin. We also reintroduced five foods to her diet, with success. Now her allergy count is just nine foods, all of which are no-nos on her health plan anyway. The change has been astounding. We have our girl back. To address her infections, she first took liquid caprylic acid (easily hidden in applesauce or a smoothie) to fend off the candida overgrowth in her gut and then took a very small dose of berberine for the bacterial infection. All of this was done under the care of medical professionals who calculated dosing, frequency, and duration.

Our family physician has agreed to take on Toodle’s case so we don’t have to go to Texas every time we have a question. He is amazing, too. “Here’s what we’re going to do, Mom,” he said to me, “we are going to stop treating everything with steroids and antibiotics. They have their place but have done more harm than good in this particular case. We are going to take it slowly when she does get sick so we can decide what treatment is best for her. And we’re going to find her a lifestyle that supports HER. It’s so cool, Mom, that you found this clinic in Austin and sought more answers.” Wow. That’s a far cry from the dermatologist who yelled at me for pulling gluten and dairy out of Toodle’s diet.

We now have a supportive medical “team.” Takes a load off my back. But more importantly, we have our little girl back. Seriously, this kid just amazes us.

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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.

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!

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.

WE HAVE HAIR!!!! Yes, indeedy. 30 days into a new eating plan and Toodle has FULL-ON HAIR.

It is the sweetest, most precious, baby-fine, bleach-blonde peach fuzz I have ever seen. I need more adjectives and hyperbole in that last sentence. But, slow as it is to come in, it is adorable. Her hair looks like newborn hair, soft and delicate. So then I not only get emotional about this major medical development, but I also reminisce about her newborn days. Because motherhood. Gets me every time.

And this is ALL WITHOUT PRESCRIPTIONS. Yes, perhaps the greatest joy I have about this development is we are gaining strides without steroid creams. After extreme hair fall the past four months, her body is turning a corner all on its own. Why and how? Well, this. Hang in there with me.

K-Hubs and I had been losing sleep, as in, literally staying up at night while the girls slept, debating our options for her treatment. Making medical decisions for someone else is an entirely different ball game. And when it’s for a little? Well, let the guilt and cognitive dissonance come flooding in.

We began to feel guilty about putting her on a steroid in the first place. But K-Hubs and I didn’t know any better two years ago. Honestly, no one did. And then I felt bad about considering taking her off the steroid without having an alternative. Never mind that the medicine didn’t actually work as a cure and stopping treatment was a logical option. I couldn’t just quit on her. False security wouldn’t let me. Because motherhood. Gets me every time. Bald is definitely beautiful. But I kept thinking, so, too, is a healthy immune system.

Rare but serious side effects of the steroid treatment include Cushing’s syndrome, a poorly functioning pituitary gland, and a poorly functioning hypothalamus. These are extreme examples, and patients are supposed to go off the medication after something like two weeks. But, omigosh, this kid has been on the medicine for TWO YEARS. So now I get to panic about the damage we’ve already done to her. Because motherhood. Gets me every time.

And then I found Dr. Amy Myers and her book The Autoimmune Solution, a work that promotes more than just autoimmune health. She goes in-depth about inflammation and resulting diseases, covering everything from acne and ear infections to weight issues and fibromyalgia.

The diet and lifestyle are strict. But, the benefits are worth it. One element of the plan includes stopping all nonessential medications. The timing couldn’t have been better. No more sleepless nights. This is what we were looking for. So, out went the clobetasol. And in came more fruits, vegetables, bone broth, and animal protein.

I have come to believe food is medicine. And I do think Toodle’s hair is growing in as a result of this diet. One could argue that not only is food medicine, but when all the unhealthy food is gone, there is nothing left but the good. Inevitably, the body is going to heal itself. Not exactly overnight, but in due time. Rather than feel cautiously optimistic about this, I think it’s apt to say we are feeling patient. From afar, Toodle looks almost completely bald. But upon close inspection, you’ll find the adorable peach fuzz, a common beginning for regrowth in alopecia sufferers. She has both dark brown and bleach blonde fuzz. People pay big bucks for that look.

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Yes, a sweater tunic in 80-degree weather. Because, why wouldn’t you?

The girls, affectionately named Whiney and McBawlerton throughout this process, put up a fight for about two days when we started following The Autoimmune Solution because another part of the plan required us to take out ALL GRAINS. Yes, you are reading this correctly. No grains, cereals, oatmeal, rice, etc. In some autoimmune cases, the body mistakes foods like these for gluten. Because Toodle wasn’t improving to the degree we wanted prior to this diet and she has a wheat allergy, it dawned on us her body may not be able to tell the difference. Out they went, along with sugar, nuts, seeds, legumes, and nightshade vegetables. Thank God we had already given up dairy. Fine, 3/4 of our family has permanently given up dairy. Oh, I’m sorry, do I love cheese? Maybe.

However, something amazing happened. When all the tasty comfort food went out the door, never to return, it was shocking how quickly the Whiney-McBawlertons got on the fruit and vegetable bandwagon. Yeah, avocados aren’t so bad are they, kiddos? Huh, that’s what I thought.

I will admit, though, I have come around to embrace this diet. I might even consider chickens for the backyard (should we build a fence?) and a cow for our back deck (probably I should measure the deck and the cow to ensure spatial compatibility – who wants to go cow shopping with me?). What about pigs? Maybe they could sleep on our front porch. No one would notice, would they? I hear pigs are great for resale value.

I follow the diet 100% at home, but when I’m out with my friends, oh, you know I’m ordering a main dish of gluten with a side of dairy complete with sugar for dessert. Because that’s how I roll.

I told K-Hubs I would give up my beloved oatmeal but I got to keep coffee. As I told him, “I am the ONLY person in this family foursome who does not have an immediate medical reason to eat like this. I think I get wife and mother of the year for this one. Now excuse me while I drive around the neighborhood scarfing down my Jimmy John’s.” Recently, it was a bag of Doritos. I change up my parking locations so as not to appear suspicious. I can just imagine what the conversation would be like if I ever did get stopped by a cop.

COP: We got a call about a suspicious parked car. What are you doing, lady?

ME: Me? What am I doing? Just, um, inhaling a bag of Doritos.

COP: Are you high? Under the influence of anything?

ME: No. It’s not that exciting. My family just can’t have gluten. Or cheese. Or tomatoes. Or sugar. Or grains. Or nuts. Or seeds.

COP: Then what can you have?

ME: Chicken and tree bark, that’s what we can have. Delicious, too. Especially if you season it with organic dirt and all-natural leaves.

Fortunately The Autoimmune Solution comes with delicious, real-world recipes. Organic dirt is entirely optional. Lettuce chicken wraps? Yes, please. Whole chickens? Don’t get me started, but I am an expert on cooking those bad boys now. Breakfast turkey sausage? Where do I sign? Apple crisp? Twinkle Whines and then McBawls whenever we run out. Seriously. She cries in her high chair if it runs out. It doesn’t dawn on her that apple crisp doesn’t grow on trees. Well, the crisp part doesn’t anyway.

And I sleep well at night. I know that K-Hubs and Toodle are feeling the best they have felt in years. I tell myself the new diet will heal them and maybe even undo the effects of having been on medication. Toodle’s hair is growing in slowly, but now I feel confident that if, for some reason, she has another hair fall episode, I can keep searching. There are people out there way smarter than me who have the same questions I do, and they have the labs and resources to find the answers and pass them down to me.

As for Twinkle, I worry less about her getting an autoimmune disease. She is at a much higher risk for it than, say, I am. But with this plan, we are all eating healthy, and I know it has been good for me, too. I confess I feel a little pride in that. But, that coffee? Oh, yes, I still look forward to it every morning.

The broth has magical healing powers. So a contest to see who could finish theirs first encouraged mass consumption. Also, Toodle doesn't like new things, so plugging one's nose became a vital component to winning the contest.

The broth has magical healing powers. So a contest to see who could finish theirs first encouraged mass consumption. Also, Toodle doesn’t like new things, so plugging one’s nose became a vital component to achieving success.

Okay, so I always thought if I ever married a book I would marry a Jane Austen novel. Mr. Darcy and Captain Wentworth. That is all. But they might have competition because I have found a new book that is taking our family by storm. Here’s the thing: I have stayed up nights, seriously, awake many nights, worrying about Toodle’s health and how we are going to eat in a way that doesn’t make all of us, Twinkle included, go absolutely nuts. How will those two get along when we’re all “no wheat” and Twinkle’s all “I want wheat and dairy and sugar and tomatoes and cauliflower because I can” and I’m all “I’m not making four meals for dinner?” How in the actual how?

You want to live with us, don’t you?

Enter Dr. Amy Myers and The Autoimmune Solution. I am in love. This 30-day healing we have been on for 5 days? It isn’t so bad. Honestly. We have to follow it to the letter in order for it to work. No cheating. No substituting. But it is pretty reasonable. It doesn’t even feel like a “diet.” I was all ready with my own 10 Commandments for how I was going to survive this (I shalt not steal, except for smells of others’ food), and I haven’t even needed them. The recipes in the book? Truthfully to die for. We will now be able to BRING FOOD FOR PEOPLE DURING THE HOLIDAYS! For real. Like, we’ll BRING A WHOLE DISH OF SOMETHING TO SHARE WITH ALL THE PEOPLE. And they will love it. We haven’t done that for a whole year.

Because alopecia tried to throw some smak (without a ‘c’, of course) and we decided to be all, “Let’s throw.” Look, I know alopecia is small compared to other autoimmune diseases. But that’s just it. Toodle, already saddled with one autoimmune disease, is at a greater risk for another autoimmune disease, likely of greater proportions. So even if we don’t “cure” or “reverse” her current symptoms, we need to help her be as healthy as possible to prevent future autoimmune disease attacks.

And Twinkle. Oh, good grief. She is at an extremely high risk for developing an autoimmune disease. While I don’t want to freak her freak, at least now I can say, “This isn’t just about your sister. We’re all in this together.” I get to make medicine and the odds be the bad guys while I go about my motherly business.

Which may or may not include standing over Toodle’s bed at night willing her immune system to relax and her hair to grow. Wait, I don’t actually do that or anything. No more so than when I willed her to breathe as an infant. Because that’s what motherhood is all about. Clearly.

Omigod, true story. The very first night at home with Toodle, we had her in a borrowed bassinet right next to K-Hubs’ side of the bed. He kept getting out of bed to see if she was still breathing, and then I finally said, “Stop it. Would you just stay in bed already? You’re shaking the bed. I gave birth. You’re a nervous nelly. I’m really tired, and my back really hurts. We all need sleep because tomorrow we are parents all day without nurses to help us.” So he complied. And then, true as toast, I bolted upright and screeched, “I can’t hear her breathing!!!!! Is she breathing????????” So that went well. Poor K-Hubs (I write that phrase a lot, ‘poor K-Hubs’). He shot out of bed and assured me she was still breathing.

I was going to be cool as a cucumber with Twinkle. You know, second child. Relaxed. Knowledgeable. But, whatever, I watched her sleep, too. So “parent” is just another word for “worry,” which makes me really good at “parenting.”

Do I think this 30-day healing diet will work? I have genuine hopes for it. I also think it’s something we can stick with for the long haul. And that is refreshing because the journey has been long.

So what in the world does this even mean for you? It means, thank you for reading this far and chin up, keep going. Whatever path you are on, keep moving. You’ll find your next right step. It may not be a hassle-free, worry-free journey. But it might take you to the next right move and the next right one after that. If I can learn how to cook whole chickens and make bone broth and use a julienne slicer, you can do this. You know yourself better than anyone else does. You know your loved ones better than anyone else does. You’ve got this. So listen. Breathe. Pray. And keep going.

I’m just going to say it. I think we should all walk around declaring we have toxic load in our bodies, which we probably actually do. Then we can do detox spa treatments completely guilt-free. Just, whatever, man. It needs to happen. At-home spas that cost just a few bucks? Yep, I’m going to try them out. Gotta keep making deposits into that energy bank.

After taking the 14 food allergies out of Toodle’s diet and attempting to introduce predominately whole foods, we’ve embarked on an “environmental clean-up” in our family.

From what we’ve learned, autoimmune diseases and allergies have genetic components. Then, something in the environment triggers the allergy or disease into action (which might explain why some people have problems with foods or toxic build-up from chemicals and others don’t).

And, as you’ll see, I wasn’t exactly raised this way. An environmental clean-up of the home is all new territory.

For starters, we are doing bentonite clay foot baths right before bed two to three times per week. According to The Wahl’s Protocol, clay is excellent for detoxification. Of course, check with your doctor first – I’m not a doctor nor do I play one on TV. People with autoimmune diseases can have toxic load, or build-up, in their systems, which complicates their health. Reducing the toxic load reduces the problems they experience.

Whether it works or not for Toodle is yet to be determined. At the very least, foot baths are an excellent excuse for at-home mother-daughter spas. And she looks absolutely adorable with her little feet soaking in the bowl. I die. She also falls right to sleep afterward. Calmer immune system? This mama thinks so.

Foot Bath Detox 2014

If you’re dying to do this at home, it’s super easy. Bentonite clay is usually found at any drug store or health foods store. We do about a half cup of clay for each large bowl of warm water (adjust more or less for stronger/diluted mixes). Stir it around and soak your feet for 20-30 minutes. Love. It. When we’re finished we pour ours out on the lawn.

We also decided to make her room a healthy place. The Wahl’s Protocol suggests going organic wherever possible, and not just with foods, to encourage the immune system to relax and balance itself. Growing up I’m not even sure I knew the word “organic” existed. I’m not sure my mother did either.

K-Hubs and I bought organic cotton bedding, curtains, and blankets for Toodle and Twinkle. We bought them from Pottery Barn Kids and Pottery Barn Teen because those were the only places I could find child-friendly designs and colors. Thank God for Black Friday specials. That stuff isn’t cheap.

For the record, even organic people like the color hot pink. Maybe I’ve just stumbled on a business idea. Organic housewares that aren’t brown or it’s cousin, beige.

Anyway, I swore my entire adult life that my kids were NEVER getting Pottery Barn stuff. They would just have to slog through life, like I did, with run-of-the-mill brands that cost $5. That lasted until about five days ago. I totally caved and didn’t even look back.

Whatever. I….I have no excuse. I bought them and felt giddy. I felt even giddier when Toodle fell immediately to sleep the first night the sheets were on her bed. You know how I feel about this if you’re following along on Facebook. Whether you can prove a parenting win or not, just take it. Take the little, unscientifically proven wins wherever you can.

Okay, then we decided to make our own carpet cleaner, using this recipe (it worked, by the way). What we had on hand was full of chemicals and potentially problematic for Toodle’s immune system. Never mind her allergies and the fact that I kept sneezing every time we used the store-bought brand. Maybe I have toxic load, too, and need to go to the spa (medically necessary and all).

You guys, what have I become? Mom and I used to clean our carpets with that powdery perfume stuff you dump on the floor and suck up with the vacuum cleaner. Remember those? They were horrible. They were also my childhood. And I survived. Making my own carpet cleaning solution is about as irreconcilable to my childhood as I can get.

So, I’ve hit a new low (or high, depending on which side of the argument you’re on) and made my own cleaner, with essential oils no less. ESSENTIAL OILS! My mother would no less have bought EEs (they have their own nickname!) than she would have put her clothes away after washing them. For the record, she left her clothes in the dryer and pulled them out throughout the week to wear to work. True story, I pulled her clothes out one time, put them in her dresser drawers, and SHE COULDN’T FIND THEM. “Where are my clothes???” In your dresser. “WHAT????” Serious as a heart attack.

The fact that I made my own carpet cleaning solution would likely have caused Mom to purchase an over-the-counter maternity test, confirming our lineage. But a few EEs later, K-Hubs and I now have fresh carpets that are relatively safe for Toodle. Oh, and I don’t sneeze anymore.

To continue the detoxification process, we bought a filtered water pitcher. But I dropped the filter in the sink. Me to K-Hubs, “Well, the water won’t have lead or whatever in it. But it will have e coli and salmonella.”

And then there was Soygate. While researching ingredients for the homemade carpet cleaner, we came across ingredients inside ingredients (with me so far?) that looked like they were allergens. And come to find out, we were right. Soy. That son of a business!

SOY IS IN ALL THE THINGS. It is in shampoos and hand soaps and dish soaps and sunscreen and EVERYTHING. Some people are highly bothered by it while others are to a lesser degree. Because we’re dealing with an autoimmune disease and allergies, we decided not to risk it. Out it goes.

So there we were with these “all natural” products that were in tune with her immune system but were totally at odds with one of her food allergies. We are on our 47th purge of the cabinets. Actually, it’s more like the 4th or 5th. But still, that’s a lot of purging.

K-Hubs and I emailed and called companies to get the 411 on their ingredients since some are derived from corn, others from fruits, but most from soybeans. I’m three shades shy of being a soy dietician. I even know how to spell D-Alpha Tocopheryl without having to look it up. No one should know how to spell that. At least I don’t know how to pronounce it. That would be the ultimate soul crusher.

Every time I see “glycerin,” “Vitamin E,” or “vegetable protein,” a part of me dies. I start to type the email, “From which of the three sources are your ingredients? Corn, fruit, or soybeans?” Please don’t say soybeans.

I’m so going to be on an episode of Cops one day. It’s going to be me throat punching soy outside a heath foods store.

However, there is a high note here. The MBA grad in me feels compelled to share a successful customer service experience. Acure was the first to get back to us. The Brand Educator was amazing. She answered all my questions, including follow-up questions to her answers because I had no clue. It was an email from a real person with a real name and a DIRECT NUMBER. Holy cow. Then she told me about the Cyber Monday specials and free shipping. Merry Healthy Christmas to us!

Will we be buying from them in the future? You know that’s right. Acure Organics Body Lotion, Calming Lavender + Echinacea Stem Cell (from plants) is to die for and is soy-free, thank God. It’s a spa in a bottle.

Stop everything you’re doing right now and go to their website and buy some for yourself. It’s medically necessary. You know, toxic load and all. “I need to get through the holidays” is a perfectly reasonable excuse to make the impulsive purchase. You could spend $10 on way worse things, like animal print leggings in the 50%-off bin.

Will any of this make a difference for Toodle’s alopecia? I honestly have no idea. After pulling out 14 foods, encouraging fruits and vegetables, and dealing with the emotions that went with those, this is a blast. “Toodle, do you want to do a foot bath?” Oh, you know she does. She’s nobody’s fool.

Toodlebug went in for allergy testing and came out allergic to the world. I’m joking, of course. Mostly. In addition to the standard fare one might expect, think indoor/outdoor allergies and cats, Toodle is also allergic to peanuts, pork, soy, and wheat. Round two added asparagus, cauliflower, raspberries (poor girl!), tomatoes, sesame seeds, ginger, and navy beans to the list. That’s a bit…tricky.

We purged the pantry again, and I ended up at the grocery store more times in two weeks than I had in the previous three months. Because we have nearly eliminated all processed foods from our diets, the hardest part is coming up with something quick at lunch or dinner if we don’t have a lot of prep time.

The big question now is whether the allergy testing was worth it. Have we seen any progress? K-Hubs and I say yes. While she still has bald patches, they aren’t spreading and new ones don’t appear to be forming. There are follicles in each patch, and hair is growing in, albeit slowly.

Another question is whether Toodle’s health, aside from hair, is improved. And to that we also say yes. Toodle is, and always will be, a spirited girl. It’s one of the many things I love about her. But she seems calmer, more able to follow through on actions and ideas. Like my mother, I am digging my heels in on this one. I whole-heartedly believe the behavior of Toodlebug’s hair is an indicator of her overall wellbeing. And maybe I can’t fix her alopecia areata, but I still believe wellness and alopecia are related.

I’m glad I pushed for round-two of allergy testing because the allergist, a little more traditional in nature than K-Hubs and I, said if her hair didn’t grow back after eliminating foods identified in the first round, there would be no need to do any other testing because the allergies were then not related to her alopecia areata.

However, per usual, something kept bugging me. Why wait? Couldn’t it be possible that some other food we hadn’t tested for be the one food that was bothering her? Couldn’t we unknowingly offer her large quantities of food that irritated her? Many people with alopecia (areata, totalis, or universalis) don’t see progress until the particularly offensive food is removed or all offensive foods are eliminated. In an effort to find alternatives to foods she could no longer eat, couldn’t we inadvertently introduce new foods that also caused allergic reactions?

It turns out, yes, that is exactly what could have happened. Tomatoes and raspberries, identified in round-two testing, were two otherwise healthy foods she not only ate in large quantities but also was highly allergic to.

Feeling self-conscious about being so persistent, I feared I was turning into “that” parent. The one everyone in the clinic whispers about. But then I had another familiar feeling. It was similar to the way Mom acted throughout my childhood every time she felt something was wrong and she was the only who could see it. She advocated for me even if, and especially when, everyone else disagreed. In spite of her 5’1 frame, she was a force to be reckoned with.

For example, there was the time she argued incessantly with the orthodontist. She simply would not hear about anything to do with headgear. In spite of his protests to the contrary, she was convinced the gear would pop out of my mouth and into my eyes, blinding me forever.

And then there was the time she wouldn’t let me sign up for pointe ballet classes because she was convinced I’d need foot and ankle surgery by the time I was 20.

So although I was going to wait a while for further testing after round one, I listened to my inner voice and lasted a whopping three days to set up round two. True confession, I would have set it up sooner but it was a weekend.

We have learned that autoimmune diseases are primarily environmental and less about genetics, which meant I had another nagging feeling. And an innocuous comment from the pediatrician (not the family physician referenced in the previous post) about early exposure to prevent future allergies led me down a pointless path.

This time the nagging feeling was that we had done something wrong. Maybe we washed our hands too much when she was little or not enough. Maybe we bathed her too often or not often enough. Did we overexpose her to germs, but maybe the wrong ones? And the family cat we never got? What if that was the whole reason she acquired alopecia areata. The “environment” we created for her was all wrong. This could have all been prevented had we just gotten a family pet. Well, shoot. We failed as parents before we even got her to Kindergarten.

But I like to think God smiles on us more often than we realize. And after the first round of testing, a woman approached me in the health foods aisle at the grocery store with a question about milk alternatives. This led to trading stories about our allergy-prone children. The woman, to whom I will always be grateful, said, “Oh, you need that book by that doctor who cured herself of Multiple Sclerosis through diet and exercise. Can’t remember her name. Something like Wall.”

Enter The Wahls Protocol: How I Beat Progressive MS Using Paleo Principles and Functional Medicine. The book has been a game changer, a lifesaver, for us. The Wahls Protocol answered many of my insecurities about Toodle’s health and why I am drawn to doctors who also have a functional approach to medicine.

Environmental doesn’t automatically mean “parental screw-up” like I had been secretly thinking. Environmental includes anything from an illness at some point in one’s life to exposure to a toxin. High fevers are also possible culprits. And combined with genetics, which do play a part, there are some people who are going to be more prone to autoimmune diseases than others. But if the environment is the main cause, then maybe the environment can be the main cure, too. Hence the emphasis in her book on diet, exercise, and assessment of stress and environmental toxins.

Dr. Wahls’ book got me thinking maybe symptoms don’t always tie nicely into one diagnosis. At the risk of making Toodlebug “special,” I found myself wondering, instead of anaphylactic shock, what if her symptoms were behavioral? What if, instead of getting physically sick from offending foods, she is ill behaved at the table because she genuinely doesn’t feel well? What if, instead of swelling and rashes with each meal, she is distracted, irritable, and hyper? This seemed to be the case for Toodle.

What are we doing about it? I remember having extremely sensitive skin until I was in high school. Mom, Dad, The Gram, and Auntie tried to keep me away from potpourri stores, perfumes, certain jewelry, and even makeup. I didn’t wear foundation until I was a sophomore. Only once Mom suggested I give it a try did I actually start.

In that same vein we have focused on perfumes and chemicals that might be bothersome. We have changed out her detergent. Overkill? Probably. But we had some Charlie’s Soap on hand so the switch was easy. Reflecting back on the little things my family did for me, I remember secretly thanking them for trying.

And once I learned the medicine she takes thins her scalp to allow it to work (I don’t know how that one never dawned on me), I traded out her shampoo and conditioner. Thank you to the lovely Whole Foods employee who helped me find an all-natural alternative that didn’t include wheat or soy. That was not an easy task.

We have eliminated nearly all processed foods. Someone hold me. I could really go for boxed brownies right now.

Toodle also drinks rice milk, and we buy our fruits and vegetables in bulk at Costco. K-Hubs is the official freezer of foods for the family. He found this site particularly helpful for learning how to freeze various foods.

What about sugar? That’s where I draw the line. I’ll give up wheat and all the goodness that goes with it. I’ll give up soy and every soy-laced chocolate on the planet. I’ll steer clear of cheese and eat it privately in the company of dear friends who let me eat the last piece. I’ll eat Jimmy John’s in my car on a side street and sneak cookies at kids’ birthday parties. I’ll develop an honest affection for fruit and kale smoothies (sweetened, of course). But sugar? I will not give up sugar.

Why? Because I have absolutely no idea how to cook with it’s brothers and sisters. Stevia? You have no idea how many desserts I have thrown away trying to bake with stevia and a bulking agent like applesauce. Agave nectar? Well, of course it isn’t recommended in large doses because that’s the one I have reasonable success with. I’m like Julia Roberts in Pretty Woman. “That’s the fork I know.”

Twinkleberry eats the rubbery cookies I have attempted to make, but she also tries to eat foam bath toys, so I don’t take her vote with a lot of confidence. To the men and women who have learned to make 7-layer cakes with stevia, honey, and egg whites, I salute you. K-Hubs does, too. He’d actually like to meet you and not-so-secretly wonders if you’ll adopt him for dinner and let him stay for dessert.

People with alopecia areata often do give up sugar. And eventually, I will have a burst of patience and attempt to bake with sugar alternatives again. For now, we are letting Toodle eat some sweet treats but only in small quantities. In cutting out processed foods, I was surprised how much we had cut back on sugar already.

There may be other foods to avoid, but the first two rounds were enlightening. The testing process was bothersome enough for Toodle (we are doing the scratch test as covered by insurance – I’ve heard of a blood-draw/panel option, too) that K-Hubs and I decided to postpone testing for tree nuts and shellfish since she doesn’t eat foods in either group with regularity. Already we feel a sense of relief and an ability to care for Toodle, which has been our main goal from the beginning.

As curious as we are to see how this evolves, there is another person to add to the list. The allergist. We go back for a follow-up assessment in two months. When I asked what the meeting would be about, he said, “I want to see if the hair grows back. I want to see what her scalp looks like.” I’ll accept that. We want that as well.

RESOURCES

I promised in my previous post that I would share articles and websites that have been helpful in understanding what to try and what to expect. Below are a few of my favorites.

Cookbooks:

  • Vitamix Recipe book that came with my 5200 Series
  • Better Homes and Gardens – I modify individual ingredients
  • The Wahls’ Protocol – Awesome starter recipes

Websites:

I can’t speak to the validity of any of these articles and resources, only that they helped me better understand Toodle’s situation and my own uncertainties of how we were initially addressing her alopecia areata.

 

 

In the year that we’ve known about Toodlebug’s alopecia diagnosis, K-Hubs and I have also learned that most of what we know has come from others with alopecia. So, although we don’t have answers for what works yet, I’ve decided to share our story to benefit others in the same situation.

A year ago, I was pregnant with Twinkleberry and far enough along to also have the glucose test.  I’m Rh negative and had to have a Rhogam shot. Since the appointment was going to take a long time, I asked a neighbor to watch Toodlebug.

The neighbor always styles her daughter’s hair to the nines and did Toodlebug’s hair that day, too. I was amazed she could get Toodle to sit that long. But that was also when I noticed a strange bald patch at the base of her hairline.

Being pregnant and otherwise neurotic, I was convinced it was some rare disease like ringworm of the brain. I was half right. I’m not sure ringworm of the brain even exists, but other rare diseases do.

We took Toodle to the family physician for a diaper rash, and I said, “Oh, by the way, can you check this random bald spot on her head?”

He referred us to a dermatologist who told me it was alopecia areata, an autoimmune disease that attacks the hair follicles on the head and sometimes the beard area causing patchy baldness. In extreme cases a person can be completely bald (alopecia totalis) or completely hairless all over the body (alopecia universalis).

After doing research, I have learned our experience was not much different than many other alopecia sufferers. The dermatologist said there is no cure and aside from topical creams and steroid injections into the bald spots, there’s not much you can do. He sent us home. End of story.

Being extremely pregnant, I remember not being able to really deal with it, so I focused primarily on applying the topical steroid twice daily as diligently as I could.

But after seeing the patches spread, and settling into a routine with Toodle and newborn Twinkleberry, I started to wonder if the topical treatment was the best response to the disease.

To make us feel better, people kept saying that hair or no hair, Toodle was going to be just fine. Since there is no physical pain involved, we should consider ourselves lucky. It’s cosmetic after all, and beauty comes from within.

Except something kept nagging at me. Why was this happening to her? Not in the sense of a pitiful “why her?” (although that happened at times, too) but a physiological, what-is-going-on-with-her-health kind of thing.

About nine months into the diagnosis, it was my mother-in-law who asked whether Toodlebug’s seasonal and milk allergies had anything to do with it. I quickly answered in the same vein as the dermatologist and said, no, although people with alopecia often have allergies, the one doesn’t cause the other. There’s nothing we can do.

But she had me thinking. So I ditched the family, ran upstairs, and searched on the iPad for diet and alopecia links. I found more information than I knew what to do with.

And the vast majority came from alopecia sufferers, not doctors.

There isn’t a cure for alopecia so treatment is short-term and tricky. However, it’s possible that for some alopecia patients, changes to diet, lifestyle, and environment can make a difference in managing it.

I found a common thread in success stories was a desire on the part of the patient to try new things and a willingness on the part of a doctor to support those changes and help the patient manage the process, making recommendations and referrals from time to time.

Our experience has been no different. I wasn’t satisfied with the dermatologist. Toodlebug is young and this is a permanent condition. My unwillingness to settle was the realization that trying new things couldn’t be any worse than a lifetime of steroid treatments. That and the realization that eventually she’ll have to take this on herself. I won’t be able to do it for her. The more we learn now, the more we can arm her later with information about how her body works.

I’m not a doctor or a dietician, and please know that we have no idea what we’re doing. We’re still in the investigative stage. Please talk to your doctor to determine what is best for you. Each case is different, and the magical mix of successful components varies from person to person.

Although I am ranting about our experiences with the specialist, I do not believe all doctors are like this. I do believe they need to be a part of the process. I also believe patients have the right to advocate for their own health, care, and treatment.

K-Hubs and I immediately took gluten out of her diet. No, we didn’t set up the test. Admittedly, we figured her hair would either come back or it wouldn’t. We may get her tested eventually for Celiac disease but, one thing at a time. We have also removed dairy and are now in the process of limiting sugar intake as much as possible.

At our yearly check-up I casually mentioned to the dermatologist’s nurse that we had started removing gluten and dairy from Toodlebug’s diet and thought we were seeing some improvement. She reported this to the dermatologist who spent the rest of the appointment reconfirming with me that I knew he hadn’t authorized that. Yes, I said, I knew that. So he asked again, to which I replied the same. And he asked again. You get the idea. He then prescribed a new, stronger ointment that has been linked to cancer and said he wasn’t convinced about the link between diet and alopecia. Fair enough.

I left the appointment feeling like I had been dabbling in dark magic, failing my daughter for not accepting her for exactly who she was, and superficial for worrying about something as minor as hair loss.

But I’ve always had three prayers for my children – I pray for their safety, their happiness, and their health. If Toodlebug’s immune system is out of whack, I want to know why. If the alopecia is a symptom of something else, I want to know what.

After two weeks of feeling downright depressed about the whole thing and freaking out about the new treatment, which I couldn’t bring myself to use, I finally told K-Hubs I couldn’t do it. I couldn’t do the new treatment. Not until I had met with the family physician, the same one who made the referral.

So off to him we went. I told him about us removing gluten and dairy and my suspicion that Toodlebug is vitamin deficient. I apologized for doing online research, fearing I’d get the same reaction as I had at the dermatology office.

Instead he said, “You have a child with alopecia areata…and she’s four. That’s a BIG deal. Of course you’re going to do your own research. That’s what parents do.”

That’s all I needed to hear.

He shared that allergies are common among alopecia sufferers as are vitamin deficiencies. Testing for vitamin deficiencies is tricky with alopecia because the “symptom” is often the hair loss and not other obvious signs. He said for us to keep an eye on her vitamin D and iron intakes. If we don’t see improvement, when she’s older we can look into doing blood draws.

He checked her scalp, something the dermatologist didn’t do until I asked (no joke) because I saw a mark on her scalp (there’s that ringworm of the brain again – no, it was just a benign spot). The family physician noticed she has hair follicles showing in the bald patches. He said, “Let’s keep going with the diet changes, Mom. I’m seeing follicles. I’m seriously seeing follicles.”

Squeeeee!

Truth be told, the follicles could have nothing to do with diet changes. The condition can ebb and flow on its own. For now, K-Hubs and I think the hair fall is slowing. We also agree we’re using less of the topical steroid (different stuff from the one that is linked to cancer). Admittedly, we may be just getting better at applying the medicine and a new patch could present itself tomorrow. But we’ll take small wins wherever we can.

The family physician also referred us on for allergy testing (our appointment is in the near future) and said to focus on healthy foods for her. If her immune system is out of whack, eating healthy is critical.

Although I don’t whether it makes any difference, we have changed out Toodlebug’s shampoo and conditioner with something all natural, and we have changed her laundry detergent as well. We are also focusing on stress management and positive self talk for her since stress can have a negative effect, from what I’ve learned, on alopecia.

Interestingly, spirited children are more likely to have allergies and those who have alopecia are also more likely to have allergies as well. Go figure.

None of this may ever make a difference. Her condition may never change. I can live with that. However, I can’t live with not trying. As long as we try, I can live with whatever outcome presents itself.

This post has gone on long enough, so in a separate post, I’ll share what specific diet changes we’ve made and the brands we have been using so far. I’ll also include links to other stories that I have found helpful.

I grew up on boxed Mac ‘n Cheese, Coke products, tv dinners or the occasional Hot Pocket, and the cheapest shampoos available. So this is all new to me. Thanks for hanging in there. This post is a long one. But hopefully, our story will help others, even if, and maybe especially since, it isn’t over yet.