Tubes of steroid creams - August, 2012Our story began in August 2012. Our 4 year old daughter was diagnosed with 'moderate' eczema after two weeks of unbearable itching and rash patches on cheek last year. Our doctor saying eczema is 'funny that way - that it can be mild up until a certain age' - adding that we had 'been lucky up to this point'.
Unfortunately, topical steroid creams/lotions are the first-line treatment in managing eczema. So that is of course what we used to treat my daughter's eczema. I didn't know any different or should I say, any better. I trusted the treating doctors.
After only a week of using the steroid cream as directed and gradually tapering down, the rash and itch magically disappeared. What a relief. But then something odd happened. Within a few days, the rash came back but this time on the lower part of the legs and wrists as well. It was no longer just a patch on the cheeks. So we were directed once again to only use only the ointment this time for another two weeks, again tapering off gradually. The rash and itch magically disappeared. But again, the relief was short lived as the itch and rash came back within a few days of stopping the steroid cream, this time with vengeance.
So as most stories go, we did what we were told - saw the dermatologist. We were prescribed more steroid cream - this time H-Cort ointment - an oil based steroid. We continued using as directed, but found that we could no longer stop using without a bad flare up. At first, we had to apply at least every other day, then every day, then twice a day to control the itch. For the next 10 months, this continued. I felt like it was a cat/mouse game - that we were chasing the rashes all over my daughter's body with creams. We started realizing that the steroids were losing their effectiveness and 70% of our daughter's body was now covered in a itchy red rash (all but her face, stomach and buttocks). Steroid creams were no longer helping like they used to. At this point, I knew we had a HUGE problem on our hands, but I didn't realize that her skin had already become addicted to the poison.
No doctor EVER warned us that skin could become addicted to steroid cream. I had only heard of skin thinning issues - the least of our problems. I think as most parents are, I was hesitant to use steroid creams, but desperate to find relief for my daughter, I went along as I was told that it was perfectly safe to use and furthermore, we weren't using steroids long term over years and years - so not to worry. What the $#@#!??? ! And we weren't just told this by one doctor, we were told this by 5 different doctors we took her to.
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Nightmare Begin - December, 2012I am not even going to bore you with the details in regards to all the doctors and specialists we saw over the year trying to figure out how to manage our daughter's now all the rash and itch. ALL had the same message. There was nothing they could do for us, blah blah blah, but hopefully our daughter will outgrow this horrific skin disease by time she is a teenager"? What! Well, what do we do in the meantime?
Little did we know at the time, the nightmare had just begun. Unbeknownst to us, topical steroid creams had already taken over our life and was wreaking havoc on our daughter's little body! We were worried about how to just survive day to day, night to night. Our daughter's skin condition was so poor. Worst of all, we were alone in this nightmare. We were left feeling depressed, anxious, and completely hopeless.
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It is NOT just a bad case of eczema - January, 2013We eventually learned that what started off as eczema for our daughter turned into what is known as 'red skin syndrome' or topical steroid addiction. I also learned that some individuals experience TSA after only using steroid creams for a week. We had used them for a year :(
Incessant itching/scratching was a key symptom with our daughter. She scratched whether it was because of itching or burning to try and bring relief to the uncomfortable feeling - didn't matter how much steroid cream we slathered on her skin, she eventually would starting scratching again....
Another key indicator for red skin for us was as soon as we stopped the steroid creams for more than a few days, we noticed a rebound effect - meaning her skin flared even worse and turned kind of blotchy red spreading up her legs every time we tried to stop the steroid creams. It started to feel like we couldn't skip a day without applying the creams because the skin flared worse each time - what we would later learn is that her skin was 'addicted' to the steroid creams.
We had tried everything, exhausting all other options out there, getting rid of all possible triggers for our daughter's supposed 'eczema' such as elimination diets, switching lotions, soaps, double/triple rinsing everything, nightly cool showers followed by all over moisturizing, avoidance of ALL suspected allergens, and every other crazy humanly possible thing a parent can do to try and bring relief to a child...AND even after all this, we were still pulling our hair out perplexed by what appeared to doctors as 'out of control eczema'. We have a pretty sure bet that perhaps we are dealing with more than 'JUST' a bad case of eczema. At this point, from a logical standpoint, we really had nothing to lose by taking our daughter off of all steroid creams because she was just as miserable on them.
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Withdrawing off steroids is HELL! - February, 2013Withdrawing off steroids is HELL! Not going to lie. It was worse than the itchy eczema we were dealing with before stopping steroids and believe me, I didn't think it could get any worse.
Day 4 of being off of all steroid creams - "my daughter's skin turned blotchy red across her legs and elbows. I have never seen anything like it. It does not look like typical eczema.
Written at the 2 weeks of being off of steroids:
"Also, red rashes, blotchy redness over legs and elbows, extremely dry skin, rough/sandpaper feel, walrus wrinkles and elephant leathery skin, flaking, inflammation, crusting, cracking and some oozing, redness, burning when her skin touched the water during the initial withdrawal week". "We all want to die".
So I often questioned in the earlier stages of steroid withdrawal whether or not she was indeed suffering from Topical Steroid Withdrawal or just a bad flare of her eczema that made her insanely itchy (as she was itchy before withdrawals, just not as bad). Were we putting her through this for nothing?
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