The Rollercoaster of Eczema for Mothers of Small Children

by Natasha Scripture April 25, 2023

father looking at sons back

No one can quite understand the journey of an eczema mom, except for another eczema mom. Before I had my son last year, I only thought of eczema as chronic dry skin that could make a person uncomfortable. My late aunt in India struggled with it and I remember her having a small apothecary of turmeric-infused creams which she would smear across her ashy, flakey skin to no avail.

In the last year, however, I’ve unfortunately become more acquainted with the inflammatory skin condition, also known as atopic dermatitis, as my one-year-old son is beleaguered with it. While his case is considered “mild to moderate,” it has crippled us because it causes him to itch incessantly, especially at nighttime when histamine levels are higher. This has lead to countless sleep-deprived nights where I have to hold his arms to keep him from scratching himself raw, slather him with heavy duty creams, don him in cooling bamboo pajamas and scratch mittens and, when desperate, administer an antihistamine just to get some respite. (Thankfully, I was already a believer in bedsharing with my babies as I could not imagine trying to get an eczema child to sleep through the night in a crib).

The early stages

It all began with a patch of dry skin under his arm at three months. I pointed it out to the pediatrician I was taking him to at the time, who sternly raised his eyebrows and advised that I moisturize it with Aquaphor, a popular petroleum-based skin ointment used on children, to keep it from getting infected. I have since moved on from his practice after some negligence around vaccines, but I guess he knew what challenges were in store for me (though I was clueless at the time).

As weeks went by, I raised it at the next practice I went to, especially as I was troubled by a small patch on his face that had started to ooze. The pediatrician there told me there was no cure for eczema, and prescribed steroids and the topical antibiotic ointment Mupirocin used to treat impetigo. Pretty standard protocol among mainstream pediatricians I would later learn. She sent me on my way without even suggesting that any of it could be gut-related, or recommending I look into allergy testing, something that had come up repeatedly in my research: there is no cure for eczema, though modifications to diet and gut health could reap substantial improvements, sometimes clearing the skin entirely.

Allergy testing

I left that pediatric practice and went to the one my daughter goes to, which I’d avoided initially because of the distance from our house (we’d moved to the country house during the pandemic). I also made an appointment with an allergist for a skin prick test, also called a puncture or scratch test, during which they check for immediate allergic reactions.

One of the main diagnostic tools to evaluate for an immunoglobulin E (IgE) mediated food allergy, it was conducted on my son’s back and almost instantly, his skin erupted into hives: small red lumps all across his precious little back. They swiftly gave him Benadryl, after which he promptly passed out in my arms, heavy and warm.

The allergist rattled off the things he was allergic to—oats, eggs, dairy and nuts—adding that while I should avoid those things, I should continue breastfeeding and switch to an amino acid formula, the most hypoallergenic version of formula, when supplementing. Thankfully he was not allergic to wheat or chicken. Not much explanation was given, but I was sent on my way with a prescription for the dreaded EpiPen and told to come back in six months.

There’s a slew of information out there about the accuracy of these tests. I read a positive skin prick test (SPT) is reliable about half the the time, but a negative SPT result is around 95 percent correct. On its own, the positive result means the body has produced allergic antibodies, called IgE, to a specific food. This is referred to as “sensitization”—not enough for an actual diagnosis.

A blood test, the next step, would be more accurate. I started to research local phlebotomists skilled in using butterfly needles as I didn’t want to fool around with botching tiny veins.

Creams galore

Meanwhile, I spent a small fortune on purportedly “calming” or “healing” creams with shea butter or cocoa butter or aloe vera or mango butter or manuka honey to keep the dryness at bay. Some things seem like they’re working, his skin gets better, and then it gets bad again, sometimes in different places. Rollercoaster is the word that comes to mind.

I tried everything from mainstream eczema creams like Cerave to skin sprays to help the skin’s microbiome like SkinSmart and BRIOTECH Topical Skin Spray to homemade rosewater-turmeric concoctions made by me or someone on Etsy to witch hazel, apple cider vinegar and homeopathic creams that mimic steroids without the negative side effects.

I even tracked down an esoteric cream made in the Philippines that did nothing. A well-intentioned hippie friend told me to lick the baby (advocating for the curative properties of saliva); my postpartum doula said to spray my breastmilk all over the baby. Sadly, as a long-time vegetarian, cutting out dairy had been challenging and my supply plummeted. I lasted a month but saw no improvements in the baby’s skin.

I was then told by my lactation consultant I had to wait three months to see any noticeable changes. I’ve learned that dealing with this condition requires quite a bit of patience, especially if you are hoping for instant gratification.

Determining what to eat

I consulted a wonderful, well-intentioned nursing advocate from Free To Feed, an organization that educates mothers on how to breastfeed babies with food allergies, who shared allergy-friendly recipes and even told me where to find vegan chocolate chips (yay?) I scoured cookbooks and learned how to make the perfect roast chicken. So chicken it was, every night, even though I don’t eat meat and my toddler only eats macaroni and cheese of course and my partner expressed his preference to never ever see chicken on his plate again. But chicken was safe and I was terrified.

At first, I was reassured that my son had no wheat allergy—who can live without bread and pasta? Of course, my relief was short-lived after I became more aware of the inflammatory properties of gluten, one of the top allergens in the country alongside milk, eggs, fish and nuts.

As I went deeper into my eczema rabbit hole, the GAPS diet seemed to be a promising path: cutting out grains, pasteurized dairy, starchy vegetables and refined carbohydrates and healing the gut with meat and bone broths.

Eczema in the US

Today, around 9.6 million kids under the age of 18 in the U.S. have eczema and roughly 60% of eczema in young children starts before they turn one. Some experts argue that environmental factors or allergens are the main drivers of eczema, a condition that has become notoriously common in infants. Certain foods, such as nuts, milk, and wheat, can trigger the release of inflammation-causing T cells and immunoglobulin-E which can cause eczema flare ups. Others believe it is largely genetic.

More treatments

As everyone knows, having a new baby is quite a bit of work but having an eczema-allergy baby is next level. I also feared I wasn’t paying as much attention as I would want to my blossoming three-year-old whose patience and empathy continues to astound me. At my lowest points, I feel like the worst mother even when I pour my entire soul into my kids. I cry and cry and feel so helpless and incompetent. How come I can’t fix this?

Bouts of insecurity plague me and I’m convinced that any other mom would have figured out a solution by now, even though it’s not been without effort—consultations with homeopaths, numerous sessions with a chiropractor (who made me feel terrible for partially vaccinating the baby, insinuating that was the cause of all of his physical distress—I have since stopped vaccines for the time being), dead sea salt baths and a myriad topical treatments, organic cotton or bamboo everything, high-end air filters, and expensive probiotics.

I even did cranial-sacral healing treatments with a woman who said the eczema is because baby feels ambivalence about whether or not we want him. Perhaps it was because was in the NICU for 6 hours after birth (the hospital was being abundantly cautious), or maybe he sensed his Dad had to be talked into having a second child and wasn’t truly on board until he held him for the first time (aren’t most men like this?)

We started NAET, or Nambudripad Allergy Elimination Technique, which conveniently my partner can do in his capacity as a doctor and acupuncturist but it is a nearly impossible undertaking with the world’s squiggliest baby as I have to be the “host,” holding him while I get needles pressed into my skin. Nerve-racking to say the least.

I sent the baby’s green souffle-like poop to have it analyzed by a company called Tiny Health, which ended up recommending the same probiotics he was already on. I tried goat milk formula and took him to a swimming pool (bleach is said to help eczema, not in our case). He gets twice daily baths in lukewarm water with a very mild soap, or nothing at all. It’s the place where he is the happiest, and totally itchless. He beams his beautiful ten-teethed smile, his skin moist and pink as he slams the Green Toy submarine around the bubble-less tub of water.

Lonely journey

Trust me, when you’re an eczema mom, you’ll do anything to alleviate the discomfort it causes because it feels so primal. I feel rage towards it. It’s such a lonely journey, it’s such a specific journey too. On the one hand, it bonds my partner and I, we feel like we are a squat team against eczema; on the other hand, we are sleep-deprived and grumpy and often short with each other especially at three am when one of us has had to put another layer of Vaseline on the baby to appease his itching when we just long to sleep through the night and be normal again.

I start feeling resentful that barring a few close friends of mine and my mom, no one checks up on me. My brother occasionally offers some alternative health options he has researched, like reishi or turkey tail mushrooms, but I am nervous to experiment with something that has no documented effects on small babies. My mother sends me links with so-called old-school cures for eczema like cornstarch (which didn’t work) or random stuff she’s found on the Internet.

It’s no secret that motherhood can be a lonely experience but imagine being in the countryside far from your tribe raising two kids virtually on your own (my partner commutes from DC where he runs a medical practice and gets home late). Not to mention very few relatives have actually checked up on me and asked me how I am faring since the arrival of baby number two, or if I need anything. You know what, a homecooked meal would be great since we don’t get delivery out here, and I would love to hang up my chef hat for a night. Even a simple text (“how are you doing?”) or phone call would be the decent thing to do. I try not to take it personally, but when I think about the “it takes a village adage,” I feel despair. I turn to other mothers in eczema groups on Facebook where I find solace and solidarity. They have become a lifeline. They are desperate too. When I read their posts, I realize I’m not crazy and that maybe it’s not so bad for me compared to others. In these groups, there are some terrible, cringe-worthy photos of babies that have clawed themselves, scabs everywhere or have staph infections across their bodies; in comparison, my son’s skin looks pretty good.

Maybe I’m doing something right?

Removing all nuts from the house

I found a second allergist, who explained things much better than the first one and told me she would take ownership of my son’s allergies since the pediatricians kind of shrugged their shoulders (they totally defer to allergists when it comes to allergies, naturally). I nearly cried in her lap in relief when she said this.

When I got the bloodwork she ordered back, it showed medium allergies to oat, egg and dairy, but a severe allergy to nuts of all kinds, especially pistachios (which I ate throughout my pregnancy). He hasn’t even tried a nut, but as soon as I saw that burgundy color on the lab report I went through the entire pantry and tossed all of our nuts away—granola bars with nuts, jars of walnuts for baking, any nutty cereals, and all the almond and peanut butters (sorry teen babysitter, you’re going to have to think of another lunch sandwich besides PB&J).

I was panicked. What if someone comes over who just ate a Reese’s peanut butter cup and somehow their peanut buttery breath gets on the baby? The word anaphylactic haunts me. I watched YouTube videos of how to use an EpiPen and a chance visit with my cousin ended up being an EpiPen tutorial (turns out she has two allergy kids and has had to rush them to the hospital on numerous occasions as well as use the pen itself – gulp).

To demonstrate, she held it in her hand and stabbed the kitchen counter with it, showing me how to hold it correctly, and how to push the button. She’s a professional athlete with a medical degree; it seemed so simple and easy for her (I’m a writer terrified of needles). I would have to practice. Her blunt wisdom: if you think he is having a severe allergic reaction (one sign could be difficulty breathing), then use it because it can’t hurt. The alternative could be death.

Doctor in India

Lately, I’ve been consulting a warm and reassuring Ayurvedic doctor in India, Dr. Sambhu Pillai of Ayusha Ayurvedic Panchakarma Centre, who told me that a mother’s nervous system is intrinsically tied to the baby’s (especially as I am nursing and bedsharing). A 5,000-year-old alternative medicine system originating in India, Ayurveda has a holistic approach to all ailments, honing in on any imbalance in the system. I was told I have to work on calming my Pitta-Vata self before anything can get better (to say that my nerves are frayed is an understatement). He prescribed coconut oil massages for both my son and I, ten minutes a day on each of us—not an easy task on a slithery baby—as well as cutting out anything that could be inflammatory for anyone (eg gluten).

He is less focused on the baby’s diet, believing it will resolve itself in time, but on my stress levels, saying that I’m suffering from neurol overload and that (somehow) I need to become less sensitive. Whatever I feel the baby feels (poor guy). Creating an ambiance of security is fifty percent of the medicine, according to this doctor. Everything he said resonated with me. It is true that my pregnancy was a stressful time. Physically, I felt great but there were many external factors that contributed to high stress levels and high cortisol levels during that time unfortunately (the COVID-19 pandemic alongside typical life stuff like packing up and selling our childhood home and re-locating my mother, and professional stress for both myself and my partner) which I now believe may have triggered this condition, at least in part. Either way, I try to remember it’s not helpful to blame myself.

Lately, I’ve been skimming dozens of books on motherhood and self-care, carving out time for bubble baths, yoga in the sunshine, gardening and playing the piano—these are the things that calm me. I feel less guilty about doing those things now because they help me, and in turn, they help my baby.

Time will tell

I’m nearing the end of my nursing journey and worry about his weight gain with all of the restrictions (and he can’t live on Lesser Evil Paleo Puffs). I have been giving the baby homemade coconut milk using organic coconut flakes, a pinch of grey Celtic sea salt, vanilla extract and maple syrup. He is gulping it down and doesn’t seem to be reacting to it. I take this as a win. I stir nourishing ghee, or clarified butter which has the milk solids cooked out of it, into buckwheat porridge and add cinnamon. He gobbles it up. Also, a win.

I repress the animal rights convictions that turned me into a vegetarian in the first place 30 years ago and break the bones of a whole chicken so it fits in an instant pot in order to make slow-cooked meat broth. The stock contains minerals in a form the body can absorb easily, so I feel he is getting nutrients.

The other night he slept for five hours straight—maybe the year of 2 to 4 hours of sleep a night are behind me? I’ve learned to function on four hours of sleep, parenting a toddler and a baby, somehow managing pre-school commutes, daily homecooked meals for varying taste buds, and recently doing some consulting work as my resume was starting to look pretty thin.

I don’t want to have too much of a gap on my resume as heaven forbid I have to explain to a future employer I took time off to mother my children—they won’t hire me because they’ll see where my priorities lie.

But that’s the last thing I need—one more thing to stress about. (Doctor’s orders).




Natasha Scripture

Author



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