Eczema, Allergies, and Steroids: Our Story (Part 1)

This is the story of our daughter C, and her battle with eczema.  I have been working on writing this for over a year.  I have alluded to C's skin issues many times here on the blog, but never told the full detailed story.  So... here it is, beginning to end.

Disclaimer, before you read further: this is a sad story.  It is also a long one-- it was a long, sad journey to healing for C.  Even now that we have (mostly) come out of the woods, writing this story resurrected some very strong emotions for me, and it may do so for you as well.  I am also posting a few disturbing pictures of her skin during her worst moments, as a means of helping tell the story.  I think that, as usual, writing about it helped me to process and heal some of my own trauma.  And in making this all public, it is my hope that our story might save another family or another child from enduring this trial... so I have decided to share.  Be aware that the sad and painful events in these posts you are about to read do eventually end happily.

When C was a little baby, about four months old, I began to notice patches of eczema on her elbows and legs.  Over the next few weeks and months they began to worsen until, by the time she was about six months old, her arms and legs were almost covered in the red, itchy patches.  I didn't notice her scratching much at this age, probably because she didn't have full control over her own hands yet, but having suffered from eczema myself in my younger adult life, I knew how itchy and miserable it can be, and it broke my heart to see her so inflamed.  I was trying lots of different creams and oils for her skin, and nothing seemed to work to make those red patches go away.  So I went to our doctor about it.  She suggested everything that we had already been trying, then finally prescribed a mild steroid cream.  I felt grateful at the time, because prescription topical steroids had given me a lot of relief from my own eczema in the past.  C's big sister N had also suffered from some eczema as a baby (although not nearly as widespread as C's was) and we had had good luck with over-the-counter hydrocortisone (which is also a mild steroid) for relief for N.  So I left our doctor's visit that day hopeful, thinking we had probably solved the problem and little C would have some relief.

And the prescription steroid did help, initially.  It did lessen her red spots.  We used the steroids off and on for about the next year and a half, with mixed results.  I kept seeking out other remedies and lotions.  Most would show us some improvement, but we found nothing that would completely clear it up.  It didn't really occur to me at the time to look for a cause of the eczema... I always just assumed that eczema was dry skin, and if you were born with dry skin, eczema would always be unavoidable.  Our doctors at the time weren't really telling us otherwise.  It wasn't until the summer of 2015, when C was 3 1/2, that I began to suspect that there were other factors at work.

That summer C would often wake up sneezy or itchy.  Her eczema always seemed to flare when we were traveling.  In particular, we stayed overnight with three different families that summer that owned cats, and she would always have a huge flare during and after the visit, and it would take us a week or two to get her healed up from all the scratching.  As I was noticing this correlation between her eczema and pets, I did some fresh research on the subject, and learned that eczema can be a symptom of a mild allergic reaction.  This was a huge light-bulb moment for me.  If we could find out whether C had any allergies, it might be a start at giving her some relief.  So off to the allergist we went.

The allergist we saw at the time suggested a scratch test based on our explanation of C's symptoms.  Although it was very scary for 3-year-old C to go through this, we agreed we needed some answers.  She actually did quite well with the skin prick part-- the most sad part for me was holding her hands during the 10-minute waiting period so she wouldn't scratch her back and mix up the test results.  She was so itchy and it was a heartbreaking for me to have to physically restrain her.

Anyway, her positive allergy results at the time of that test were cats, dust mites, and mold.  We did test for all the top 8 food allergens, and she was negative for everything.  She was also negative to any pollen allergies on that particular test.

So... this gave us some answers, but in some ways it further complicated the problem, because completely avoiding dust mites and mold is pretty much impossible.  If this was the root cause of her eczema, it would be difficult to control by simple avoidance of triggers.  Dust mites live in any plush furniture, pillows, blankets, stuffed animals, or carpet that is more than a few months old.  You can only kill them with extreme heat.  Blankets and pillows can be put through the dryer but things like mattresses and carpets cannot.  Luckily our home had all hard-wood floors, so that was a start!  The allergist suggested getting vinyl allergy covers for her mattress and putting her pillows and blankets through the dryer often.  (This was a light-bulb moment as to why she often woke up itchy and her eczema seemed the most red and inflamed after sleeping).  As for avoiding mold spores, which are in the air everywhere, the only solution was to make sure she bathed at least once a day to wash any allergens off her skin.  Aside from daily baths, our allergist recommended Benadryl or Zyrtec when she was having flares, and also prescribed a stronger steroid.  At that time, he recommended that we bathe her daily and apply lotion all over her body, then use the steroid daily on any red spots, in attempt to keep ahead of the itch-scratch cycle.

So... thus began our daily steroid use.

The daily bathing did seem to help for a while.  I do remember it being a HUGE chore to do the bathing and lotion application every day, especially when I was hugely pregnant and exhausted and it was just one more thing at the end of a long day.  Even more so after J was born and I was even more exhausted.  M helped a lot and I'm pretty sure he took over entirely with bathing C when J was a newborn and I was nursing around the clock... although that phase of our lives is a little bit of a blur to me, so I couldn't really say for sure!!!

When we were keeping up with baths the eczema did seem improved, although it was always kind of like a ferocious tiger that we were just barely holding back from escaping.  The least little provocation-- a busy week and a missed bath or two, a visit to a hotel with bedding that was heavily bleached or a pool that was heavily chlorinated, extended time in grass or sand, and her skin would flare and we would spend the next several weeks trying to heal the scabs from fits of scratching.  She seemed so very sensitive to absolutely everything.  Looking at pictures of her from that time always makes me want to cry a little.

Always some sort of redness and inflammation around her wrists, neck, legs and fingers... even on the best of days.

It was around this time that we met some friends whose children also had suffered from eczema-- and their mother shared with me that after eliminating all dairy products from their diet, it totally cleared.  At this point we were pretty desperate and ready to try anything, so despite the fact that C had tested negative to dairy allergy on the scratch test, I thought we would try a dairy elimination and see if it helped.  Because we had done the detox that included eliminating dairy a few years earlier it was sort of on my radar, but we were still consuming quite a bit of dairy at that point so it was a pretty big change.

The verdict?  Hard to say.  I wanted to convince myself that the dietary changed showed a small improvement, but the results were not dramatic as we had hoped.  It was spring time when we tried this, and so spring-time pollen was probably ramping up, and although we didn't know about any of C's pollen allergies at the time, I'm certain that they (along with continued sensitivity to dust mites and mold) were messing with any improvement we might have noticed from the dairy elimination.

Around this time I began making an observation-- after our daily baths and moisturizer application, when I applied steroids to her skin it seemed to intensify the itching rather than calm it down.  This was the exact opposite of my own personal experience with steroids-- usually applying a steroid cream was immediate relief.  At her four-year checkup that year, I told our pediatrician at the time about my observation.  She shared my confusion and just suggested we prescribe a stronger steroid.  As we continued with the daily baths and steroid application, the stronger prescription seemed to help at first but then gradually began to cause even more intense itching.

I remember being at the beach one day with all the girls, and another mother came up to me while I was busy with baby J, tapped me on the shoulder, and said, "Excuse me, did you know that your daughter is bleeding?"  Sure enough, I turned around and there was poor C on the beach blanket, huddled up and scratching frantically at her ankles, ripping her skin to shreds.  That was kind of a pivotal moment for me-- the other mom (who probably had the kindest of intentions) made me feel like I was being neglectful, and in that moment all I wanted to do was scream, "Do you think I don't know??? Do you think I haven't tried everything I can possibly think of to put my baby out of this misery??? Don't you know that it breaks my heart to even look at her???  This is as much hell for me as it is for her!!!"  I didn't let any of those things actually come out of my mouth, but I remember that moment as being the time that I was absolutely at my wit's end.

Here are some photos from that time, on one of her bad days:

Because of my desperation, I did everything I could think of at that point.  I made C an appointment with a pediatric dermatologist (according to his reviews, the best one in the state).  I made an appointment with a chiropractor since friends of ours had said that they could be beneficial for people with allergies.  I checked out dozens of books from the library about allergies, eczema, diet, the gut, you name it.  I did a fresh round of googling.  In one of my google searches, I came across something called topical steroid resistance.  Also known as red-skin syndrome.  Also known as STEROID-INDUCED eczema.

What??  Steroid-induced?  Meaning steroids could actually be causing the problem?  This idea was completely contrary to anything any doctor had ever told me.  Hadn't her pediatrician just prescribed a *stronger* steroid as a means of controlling her eczema?

Yes, it was a wacky idea, but nothing else I came across had ever matched her symptoms so exactly.  Typical symptoms of topical steroid resistance include (taken directly from the ITSAN website):

1) "rebound" redness between steroid applications (see pictures above)

2) rashes spreading and developing in new areas of the body (what had begun on her ankles, knees and wrists now covered the length of her legs and arms and even her trunk)

3) Intense itching, burning, and stinging, especially after steroid application (yep!)

4) Failure to clear with usual course of treatment, requiring a higher potency topical steroid to achieve progressively less clearing (yep!)

5) increased allergic response (yep!)

The ITSAN website was also clear that this syndrome is very controversial, and that many mainstream doctors don't believe that it exists.  The only proof my research could offer at that point was stories of people with symptoms like C's after many years of steroid use, who then stopped cold turkey, went through a withdrawal period, and then after the withdrawal had better skin than they had ever had, even pre-steroid use.

Could this be it?  Could this be the cure-all for her?

M and I had had our reservations about using steroids from day one, but because of the relief they had offered me personally from eczema, I had figured desperate times called for desperate measures.  It had never occurred to me that the steroids could be the driving force behind all of it.  It was only then that I looked in detail at the prescription we were using at the time... my research told me that the cream her doctor had prescribed was 150 times more potent than over-the-counter hydrocortisone, and that the recommended dosage was a "finger-ful" to cover *the entire body*.  I was probably using a "finger-ful" to cover one ankle.  So I was wayyyyy over-dosing her... but no doctor had ever even mentioned how much to use, let alone cautioned me about using too much.

I should begin by saying that, around the time that I was discovering the idea of topical steroid resistance, I had done some dairy-free trials with baby J, who I was still exclusively breastfeeding at the time.  As an experiment, I had completely eliminated all dairy from my diet for about three weeks, giving the proteins time to clear my system, and then one day I drank a huge glass of cow's milk and then nursed J directly afterwards.  The immediacy of the reaction was pretty dramatic-- within about four hours of that feeding, she was covered head to toe in eczema... to the same degree of severity that C had when she was a baby.

The puzzle pieces were all falling together in my head.  C's eczema most likely had begun as a dairy sensitivity, and in our ignorance at the time, we treated the symptom instead of the cause.  My research with regard to topical steroid resistance was telling me that steroids cause thinning of the skin.  So essentially what we had been doing (unknowingly, of course) was in response to a reaction that was happening inside her body, we were actually lowering her defenses on the outside by slathering her skin, her body's largest protective organ, in something that made it weaker.  Not only did we continue to bombard the system with her allergen internally by continuing to feed her dairy products, but at the same time we weakened her defense from the outside.  No wonder she was becoming more and more sensitive to everything!!!  Her little system was being bombarded from all sides.  Granted, this was all conjecture based on my own internet research, but it seemed to make perfect sense.  Much more so than all the lack of answers we were getting from two different pediatricians, an allergist, AND a pediatric dermatologist.

{Enter alllll the mom guilt about ruining my own daughter's system, followed by allllll the anger at all of our doctors over the years who never warned us to do things differently-- and took very lightly the prescription of an extremely powerful drug to a small, vulnerable child.  These are still very strong feelings for me, even many years later.  I feel sorrow that we didn't know any better, and try to convince myself that we were all doing the best we could.  But there are times when I can't forgive or forget this massive failure to C.}

I did more and more internet research and unearthed more and more stories about people who had had the same experience.  If this was all true, however, and we decided to go forward giving up steroids entirely, then my research told me we were in for a withdrawal period that would be more hell-ish than anything we had yet experienced.  I felt unimaginable dread at the idea of suffering for C that would be even worse than her current agony.  And for some people I had read about, the withdrawal had lasted years.  Given everything that C had been through with her skin thus far in life, did I really want to put her through that?  Did I want to begin this agonizing process based simply on my own internet research, my gut feelings, and a "theory" of a syndrome that many doctors in the world denied?

The continued story in part two (click here to continue)...