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3.27.2018

Aidan's Eczema Journey: How It Began And Topical Steroid Withdrawal

"Using cortisone cream to fix eczema is a bit like painting a rickety house that's about to fall down. It makes it look better, and you may feel better for a short period of time - but ultimately the underlying issues must be healed." - The Eczema Cure by Emily Barrett

It has taken me a while to put this together because the last few months have felt like a long relay race, shuttling between the pediatrician, allergist, homeopath and dermatologist. Any time I felt like I had a handle on the situation Aidan would get another flare-up, which was frustrating to say the least, and it was hard to write about this (or get anything done for that matter) while we were in the thick of it. 

The trouble began when we were advised to start supplementing Aidan with formula after he made poor weight gain in his second month, but the organic milk-based formula we fed him made him break out into nasty hives all over his back. I took him to the allergist who told us Aidan was simply too young to have accurate testing done and prescribed a hypoallergenic formula for him. It took close to three weeks for most of his body to clear but soon his forehead became patchy and started oozing clear, sticky fluid. 




None of the natural remedies I tried worked, so I took him to the pediatrician who prescribed 1% hydrocortisone cream (a topical steroid), and in desperation I caved. If you're not familiar, it works by suppressing the immune system and reducing inflammation, albeit superficially, and for the first time in months his complexion became baby smooth again. We were told to stop the treatment once his eczema got better instead of being educated on safe steroid usage

Once I took him off the ointment in a couple of days, his eczema came back with a vengeance and took over his whole face and he developed a persistent raw patch on his right cheek. I was told to restart on the 1%, but it made no difference over the next week. When I brought him back to the pediatrician, she suggested going up to a 2.5% hydrocortisone for a week, but I knew that that wouldn't solve anything since it was only addressing the symptoms and not the root cause. I had already gone off dairy at that point, but when I asked her if I should be changing anything else in my diet since I was still nursing, she told me not to bother unless I was "one of those who could survive on quinoa and veggies". 

My sister-in-law went through the same struggle with her son's severe eczema (which she wrote about in a guest post here) and had put herself on a very restricted elimination diet to isolate the food triggers, and I remember telling Andrew then that I could never make such a sacrifice and would simply switch to formula feeding. Now that I found myself in her shoes, I understood completely why she made that decision and put myself on an anti-inflammatory and low histamine diet as prescribed by my homeopath. The fact that it was the height of flu season strengthened my resolve to continue breastfeeding so that Aidan could benefit from the antibodies in my breastmilk.

Despite my best efforts, however, his eczema continued flaring up with increasing severity. After a series of concerned emails to our homeopath, he told me that Aidan exhibited all the classic symptoms of Topical Steroid Withdrawal (also known as Red Skin Syndrome) and sent me a link that described what we were experiencing to a T. He said that unfortunately it would get worse before it gets better and that time was the best healer.

It all came to a head the morning after Valentine's Day when I woke up to Aidan's entire face red, raw and literally dripping fluid, and the patches on his body were the same way too. Andrew and I rushed him to the pediatrician and were told by the Nurse Practitioner it was one of the worst cases she'd seen and that he definitely had an infection and needed both oral and topical antibiotics (which I was okay with), children's Benadryl and if you haven't guessed by now, hydrocortisone cream. She used her calm, doctor voice to tell us that the only way to treat Aidan's eczema was using the steroids, and that we risked permanent scarring to his face if we refused. She went as far to say that she bet her entire savings account that his eczema would not come back if we stayed on course with the steroids (I am not making this up), which on hindsight was unprofessional and irresponsible. 

I broke down before her because I was so frustrated by the lack of logic in the treatment plan, and she responded by saying she could not understand what my reservation with using steroids was and asked me where I was getting my information from. Never mind that it is clearly printed on every box that hydrocortisone should not be used on children under 2, and never for more than 2 weeks. I knew we were on completely different pages and fired the practice soon after that traumatic (and expensive) visit!

For the next couple of days, I gave Aidan a break from the lotions and used only the topical antibiotic on his weeping eczema, and thankfully it calmed down pretty quickly, although I knew he could easily flare up again as long as we did not know what the triggers were. I survived on very little sleep for weeks, constantly hovering over him in his sleep to make sure he wasn't scratching himself raw, and in his awake moments I had to keep his hands busy and distract him from the itching. 

To be honest the weeks that followed went by in a blur, with us finding a new holistically-friendly pediatrician who understood our position (and accepted our insurance) and told us that we needed to get him tested for allergies since he was approaching 6 months. We saw the head of Pediatric Dermatology at Columbia who told us not to use steroids on his face as he would just wipe it away, but she still prescribed it for us to use in case of emergency. As I continued my elimination diet (which is essentially mostly chicken, turkey, lots of vegetables and gluten-free whole grains), his skin began to heal, although the cold winter air and his teething has held him back a little.

To cut a long story short, he had both blood work and a skin patch test done and tested negative for all the main allergens except for a mild sensitivity to almonds and possible allergy to cocoa/cacao! It'd be interesting over time to see how he performs on the test as he continues to mature. Last week we were finally given the go-ahead to begin introducing solids to his diet, and while we are taking things slow, this boy just can't get enough which we are so thankful for.

In my next post I will share some tips and resources that have been useful in managing Aidan's eczema, and feel free to send me any questions you may have in the meantime!

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