Eczema, Allergies, and Steroids: Our Story (Part 2)

At the end of part 1, M and I were pondering the decision to give up topical steroids in hopes that eventually, after the withdrawal period, it would cure C's eczema.

So we decided to do it-- we quit cold turkey.  We kept all of her prescriptions in the house, just in case, but I made a pact with myself that we would give it at least six months of trial (again, knowing that some people suffered from topical steroid withdrawal, or TSW, for years after quitting).

And it was just as awful as all my research said it would be.

For the first few weeks, all of her skin on her whole body took on a reddish hue.  Sadly, this was at the same time that we had our first appointment with the pediatric dermatologist, and he had recommended salt water and bleach baths.  We tried those only a few times with C screaming in agony as if she were being burned (it probably felt to her like she was) and gave up that advice pretty quickly.  {As an aside, salt water and bleach baths can be helpful remedies for some eczema sufferers as they clear bacteria from the skin; it just wasn't the time to be trying that type of thing with C, while she was so sensitive.}

The pediatric dermatologist had also prescribed an even stronger steroid than she was already using but I refused to put it on her.  We never ended up seeing this doctor again.  I was increasingly wary of any doctor's advice.  I think we were continuing to moisturize with non-steroid creams like Vaseline at that point, but pretty much everything just made it worse.  We quickly came to the realization that there wasn't much that would give her relief and we just had to wait it out.

Mercifully, she was in an afternoon preschool program and I was homeschooling the other girls at the time, so we never had to go anywhere in the mornings and I was free to let her sleep it off if needed.  Her teachers were remarkably understanding when she came in looking like her skin was falling off-- I had told them what we were trying, and they were so compassionate and supportive.

For months she couldn't stand to wear socks because she developed a phobia of taking them off, after having had them stick to her oozing skin a few times.  The only pair of shoes I could convince her to wear were leather boots with no socks.  I didn't fight her much on it... whatever felt comfortable for her in this time of extreme discomfort was okay with me.

For the first 4-5 months of withdrawal she couldn't stand to be immersed in water, so we sponge-bathed her and washed her hair in the sink.  Again, I knew we were probably in the worst of it, so we just found methods of getting by that would work for her.

The worst part was the itch.  It was intense, frantic, and constant, peaking during the night-time hours.  There was no way to stop her from it; even in her sleep she just scratched and scratched and scratched all night long.  She was constantly exhausted because she never really slept soundly for about four months. None of the other girls could sleep in her room, and if we ever had to sleep together at a hotel her sisters were driven nearly frantic by the constant sound of her nails on her skin.  I had to remind myself that this was the sign of her deadened capillaries coming back to life-- the itch of healing, like a deep surgical wound itching as the body works to close it up... only this was happening across almost her entire body.  We tried to keep her nails really short, put socks on her hands during the night a few times (she usually pulled them off in her sleep), and tried a few other things, but nothing really worked to control her incessant, involuntary scratching.

Her skin shed off profusely as she healed-- her bed was constantly full of dead skin flakes and her sheets were often stained with blood from scratching.  Whenever we went anywhere with friends that winter (like the library, playground etc.) she mostly just sat and cuddled with me and didn't participate.  She was hyper-sensitive to temperature, so sometimes the snuggling was because she was cold, but most of the time it was just pure exhaustion.  Her energy level was low and she wore out pretty easily.

I kept seeking out non-steroid lotions and creams that would help, and we tried a number of different things.  There was one herbal remedy that seemed to show some improvement (advertised to specifically help those going through TSW), but because she was so terrified of anything that might sting, we had to hold her down and apply it while she screamed.  It did help her skin but after a while we stopped using it simply because of the trauma of applying it.

In short, it was a very traumatic six months for our whole family.

But very slowly and gradually, the intensity of her symptoms began to subside.

These pictures were taken in April of 2017, about seven months into the withdrawal period.

She still had her spots, yes, especially as spring-time pollens were ramping up at this point, but the fire-engine-red blotches were seemingly behind us.  She was also beginning to be able to sleep again, and the most intense flares of itching were becoming fewer and farther between.

At her five-year checkup that year, I told her *new* pediatrician our tale of woe.  I also shared my suspicions that she had other allergies besides just pets, dust mites and mold.  I still suspected dairy had some effect on everything although it showed up negative on her allergy scratch tests thus far.  He suggested that we run another allergy test, this time an IgE blood test, right in his own office without us having to visit the allergist again.  I agreed, despite knowing that C would not be happy about the needle.  As I suspected, she cried and had to be held down for the blood draw, but we got it done.  The results came back very positive to cats, dogs, and some tree and grass pollens, and less positive to dairy.  (There are different "classes" of allergy based on blood test results, ranked from 1 to 6, 6 being the most allergic and 1 being the least.  C's allergy to dairy, for example, is a 3, and her allergy to cats is a 6.  That's what I mean when I say more positive or less positive.)

So from that point on, with a confirmed dairy allergy, we felt more comfortable "depriving" her of dairy products, hopeful that it would be helpful in some small way.  We didn't test for any other foods at that point, mostly because I didn't suspect any other food allergies.

After the dairy elimination, along with being careful to shower off after contact with other environmental allergens, her skin got gradually better and better until, by the end of that summer (a year into steroid withdrawal), she was looking almost normal.

Here we are out in the sun, having been swimming in a chlorinated pool, and probably wearing sunscreen, all of which would have sent her into fits of itching the previous year.  But she's looking happy and clear-skinned in this picture!

We still had the occasional flare after contact with her most severe environmental allergies, but as a baseline, her skin was SO much better than it was before we began daily steroids.

At the time of C's steroid withdrawal I was feeling very anti-doctor and anti-steroid and really just disillusioned with the medical system of the world in general.  Looking back on it now, about three years later, my feelings of guilt and anger have calmed a bit, and some of my trust in modern medicine has returned.  I know that C's experience was somewhat unique, and that steroids can be helpful in certain situations.  This article sums up a pretty balanced perspective on TSW and speaks some truths about using steroids.  Through this experience however, I have certainly learned to trust my own gut as a mom, and to do lots of research on my own, and trust my child and what their symptoms can tell me, especially when there is a powerful drug in question.

C's story with regard to her skin and allergies certainly isn't over yet, and in my next post I'll talk about her first major food allergy reaction and where that has led us with regard to her health journey over the last two years.  She is certainly a brave girl and we are so very thankful for her calm perseverance, her sweet smile, and her courageous spirit!

(Move on to part 3 of the story here)