I absolutely can't believe the last blog post I wrote was the end of January. I'm pretty sure that is the longest I've gone without writing since I started blogging years and years ago. It's not like good things haven't happened to our family, or that I have nothing at all to share (I'm 23 weeks pregnant with our second girl, yippee!). It's just that we've been a little overshadowed with the bad, and I haven't known how to put it into words. Sometimes I get tired of being a Debbie Downer.
For the last year or so I, like the rest of the world, have been obsessed with the uber popular phrase Choose Joy. Nothing about it comes naturally to me, I'm a total pessimist. But it makes sense to me, and I would love my children to grow up seeing the joy in their lives. So when I'm feeling more angry or bitter or frustrated or defeated than joyful, it's hard to share that with the whole world, because I feel like I'm saying, "Hey there, look at me, the eternal pessimist!"
I especially didn't want to talk about the kids' eczema because when I wrote that post in October, I believed that was it. I needed to believe we were past the Eczema Beast. So even though things took a really bad turn for the worse in February, I didn't know how to write about it because it was painful. And raw. And I felt that I was admitting yet another failure after so proudly declaring we had conquered the Beast. Sometimes eczema feels like failure after failure. You can't ever seem to win. And it can be so utterly defeating to think you've solved their problem, shouted it from the rooftops, and then it comes back. Eczema seems to constantly evolve. And maybe adapt. You find a way to make it better, but it always gets the last laugh.
But this is a story that needs to be told. It's one that not many people know about yet. I'm a Research Junkie and as anti-steroids as they come (I've never made my opinion on those drugs a secret), but I was in the dark on this one. Eczema has become two to three times more common in the past few decades, so more and more children are being put on topical corticosteroids to treat the condition. Most are never told of the possibility of addiction and what withdrawal from topical corticosteroids looks like.
Steroid rebound. Have you heard of it? I had. It was my big fear in treating the children with topical steroids. For some, they use topical steroids to treat the patch or two of eczema on their child's body. The eczema gets better, everyone rejoices and the tube goes back into the medicine cabinet. But suddenly, the eczema comes back. And it's worse than it was before. It's spread to new parts of the body. Out comes the tube again. Some more applications, and the problem appears to be resolved yet again. But the cycle repeats. Stronger steroids are called in to treat the "worsening eczema." Rinse and repeat. For some, they use the steroid creams for too long against the advice of their doctors (steroid creams should never be applied daily!). For others, their own doctor advises them to use the creams incorrectly, for too long, and without tapering off. Either way, it's a recipe for disaster.
Steroid rebound is actually a really lousy way to describe what's really happening. As it turns out, that's just the tip of the iceberg. What we're really dealing with here, in quantities that I'm afraid are much greater than anyone is willing to admit yet, is steroid addiction. It's a medically accepted fact that steroids have the potential to be addictive. The medical community has fully accepted that steroid-induced rosacea is a real condition. In other words, the use of steroids can actually cause rosacea. From the above link:
"In a recent study, researchers examined 75 patients (62 women, 13 men) between the ages of 18 and 60 who had steroid-induced rosacea-like dermatitis. The patients had used topical corticosteroids for anywhere from three months to 10 years. More than 90 percent suffered facial redness and hotness, and 97 percent reported burning or itching. More than three quarters suffered from telangiectasia (visible blood vessels), and 40 percent had the bumps and pimples associated with subtype 3 (papulopustular) rosacea. Many patients reported emotional stress, heat or sun exposure as triggers for their outbreak of symptoms."
90 percent?! That is significant! So why is it that the medical community as a whole continues to deny what many people are experiencing and learning on their own: that treating eczema with topical corticosteroids will often not only worsen the eczema and cause it to spread, but if removed from the patient's skin care regimen, will send them into a spiral of painful and tortuous withdrawal that made their initial eczema look like a cake walk?
To understand topical steroid addiction and withdrawal, the only real way I can explain it is to explain what's happened to our little guy in the last seven months. As I talked about in October, our kids were pretty much free of eczema. I attributed it mostly to the diet change, but knew that the sea air in Myrtle Beach in September was probably helping. I even prepared myself for the possibility that when the air got dry and cold in the winter, their eczema might return, but hoped it would be mild.
It really was. Adalyn stayed clear all through winter. She got a little spot here or there, but nothing that impacted our life in any way. But one November day, Landon's face looked like this:
I panicked. A few traces of a mild flare sent my mind reeling. Would we go back to last year?! I couldn't do that. I couldn't even mentally wrap my mind around the idea that life could ever return to that nightmare. It was too much. So against every single bit of better judgment I had, and every motherly instinct that I squelched, I pulled out a tube of over-the-counter, 1% hydrocortisone. It was over-the-counter. What could it hurt?! Yes, I hated steroids. Yes, we tried to stay clear of medicines unless our lives depended on them (true story). But what could a few applications of something so mild it's sold on grocery store shelves do to harm him? Surely if I just got a handle on the eczema really early, while it was still mild, I could stop it in its tracks.
Fear is a powerful tool, and it got to me. These days, I think back on this "flare" and wonder if perhaps it was only chapped winter skin. Maybe if I left it alone, just as I had done with Ben years ago, if I had refused topical steroids, just as I had with Ben years ago, his would have just gone away on its own, like eczema often does when left alone.
But I didn't, and there's nothing I can do now to change that. But I can use it to help others. Sharing my story just means others can educate themselves and make different and better decisions than I did and hopefully prevent this sort of mess for their own children.
A few months went by with hydrocortisone application here and there. His eczema spread to his arms during that time, but it was still pretty mild and it never occurred to me that it could be from the steroids even though last year his face was pretty much the only skin affected by eczema. As you can see from the picture below, he wasn't needing his scratch sleeves at this point much at all.
While on an eczema support board on FB one day in January, someone posted a link to ITSAN.org and asked if anyone had seen it. The post was quickly ridiculed by most moms on the board and the person who posted it was basically scolded. That alone was alarming to me, and curious, so of course I had to check it out. It turns out ITSAN.org is a website dedicated to informing others of the dangers of topical steroid addiction.
The overarching theme of this "support" board on FB was that the only solution for severe eczema was to go to National Jewish Hospital in Colorado. It was something we had already talked to our doctor about, but were discouraged to go because our doctor told us if our goal was to continue to avoid steroids, NJH was the last place we wanted to be. Their solution for eczema is a course of therapy at the hospital where the child bathes for long periods of time, then gets steroid creams and moisturizers applied to their skin and then is wet wrapped. It's very structured and regimented, and it does seem to really help the children who go. The problem for us, though, was that we believed strongly that steroids were not the long-term solution for eczema. Sure, I could bathe my kid all day, every day, apply stronger and stronger steroid creams and create a lifelong dependence on them. Maybe my kid would be lucky and unaffected by these strong drugs, but the side effects were way too severe for us to be willing to risk it. We like to take the "root cause" approach because masking symptoms just makes you dependent on the mask.
On the day I learned that many children (and adults) are getting addicted to topical steroids, I decided to put the tube of hydrocortisone away for good. I believed strongly that there was no way Landon would experience withdrawal. He only used 1% hydrocortisone! For a few months! It wasn't going to happen to us. But it didn't appear to be helping, either, so what was the point of continuing to take a medicine we didn't need that had severe risks associated with it? There wasn't one.
About a week or so after we'd stopped using the hydrocortisone (which I pretty much admitted to no one, because I was ashamed that I'd resorted to steroids after my strong stance against them), Landon's eczema spread. And it was different than the eczema we'd dealt with before. Although I still had my doubts (lots of them), the picture was becoming clear quite quickly. Topical steroid withdrawal is notably different than eczema in several ways. The skin becomes red underneath. Many get what's called "red sleeves" (Landon has had this same appearance, but on his legs, stopping at the feet). Instead of regular eczema, it can look like a sunburn. For Landon, it was all this red blotchiness underneath his skin that was new to me.
Rather than those raised, scaly rashes (although he had those, too), he had this redness. He also gets that way when he eats a food he's allergic to, so at first I thought it was related to food. But it just kept spreading off and on throughout his body.
Then the skin on his neck began to change. It thickened up, almost like leather. A lot of people call it elephant skin. Totally fitting, as it resembles the skin of an elephant (also known as lichenified skin). Thick, leathery, deep wrinkles, all sort of crunched together. The deep wrinkles freaked me out. It was hard to ever get a good picture that captured what his neck actually looked like, but this is as close as I could get. This was not baby skin! And oh, did his neck ever itch! He scratched at his neck off and on for months. This was his first real "flare" spot. And about a month or month and a half ago, the skin on his neck changed, softened up, and he stopped scratching it. It appeared to be moving down to other parts of his body instead, which I was thankful for, but just this past week he's started getting bothered by his neck yet again, and it's turning back into this sort of skin yet again, so I'm afraid the cycle is just starting over.
His knees have been like this, too. Deep, deep wrinkles. Even with his one knee completely bent, you can see those wrinkle lines in his knees. I'm an adult and don't have those when I bend my knee!
A quick google images search of elephant skin steroid withdrawal will produce lots of pictures that show just how mild Landon's elephant skin has been compared to so many others who were on stronger steroids for longer periods of time.
The redness and eczema has just continued to spread through the months.
Another (and possibly the worst) sign of TS withdrawal is the horrible itching. I really cannot grasp how much this must bother them, but I'm on a support board on FB with many adults going through this, and the way they describe it makes my heart physically hurt for my son. It's an itch that they literally cannot escape. They lose sleep, many have to go on disability while going through withdrawal because they hurt and itch so badly they cannot function in any capacity. Some can't walk. The brave warriors who go through this are amazing. Landon has been in his scratch sleeves almost non-stop for months now. He has to be in them, or he will quite literally rip layers of his skin off, making him super vulnerable to infection. He started to learn to take his sleeves off during the night, and we would wake up to horrible sights.
There are good days, where we can take his sleeves off for a few hours, and as long as he's entertained and distracted and fully clothed (meaning no open access to arms or legs, but at least exposed hands), he'll not scratch. These are very common in withdrawal. They are flares. They come and go, and as the months go on, most will have longer periods between flares. Right now, we don't have any periods longer than a day or so where we can take his sleeves off for a few hours, however we have very cyclical patterns of extreme itch and total sleeplessness for a week or two, and a week or two of less itch and only waking a few times during the night.
For many on this withdrawal board, they've found relief in what they call moisturizer withdrawal. Another sign of topical steroid withdrawal is that suddenly, all (or most) moisturizers burn the skin. This has never happened to us! Shortly after withdrawal, I was putting on his normal lotion and he started screaming and crying. Some days he would act like I was torturing him if I put it on, other days he was totally fine with it. Because so many people were seeing success with shorter flares and less redness when they withdrew from moisturizer, and because I can absolutely see how artificially moisturizing your skin will condition it to create even LESS of its own oils, we stopped. We very infrequently put coconut oil on him now, but we've stopped all moisturizers in the last month or so, and the red blotches/patches are pretty much totally gone. Unfortunately, though, you can't escape the fact that it causes even worse lichenified skin/elephant skin. Another symptom of withdrawal is skin shedding like you wouldn't believe. When we take off Landon's sleeper in the morning, it basically snows. It's awful. The less you're moisturizing the skin, the more that is going to happen, obviously, but it's been happening for us since day 1 of withdrawal. Those of us who are doing it like to believe it does lessen the flare times. So far, it seems to be.
Adalyn had a moderate spring flare (the lucky girl didn't suffer mommy's bad decision to use topical steroids). It's nothing like Landon's, and if we keep her indoors all the time, her skin is almost totally fine, but I noticed that once spring hit, her legs would go crazy with eczema if she went outside. When we applied moisturizer, it was making her legs redder and blotchier, so we stopped with her, too, and maybe it's a coincidence, but her eczema improved leaps and bounds once we stopped the moisturizer.
It's a tough decision with eczema kids to keep them indoors or let them play outside. Because my husband is such an outdoors lover, I do let Adalyn go outside quite a bit. Probably much more than I should. I feel like kids should be outside having fun. But she pays the price every single time. If it's at all even warm out, her legs just flare right up. Landon is just too severe. I don't let him go outside very often. Since he has to have long sleeves and long pants with scratch sleeves over them at all times, he really can't go outside anyway once it's above, say, 73 degrees outside. The poor guy would just be too hot. So you'll usually find me inside with Landon while everyone else is playing outside.
This is Landon over the past week or two:
All I want is for people to do the research first. If you or your child is on topical steroids for eczema or considering it, please check out ITSAN.org. There is a small(ish) group of us who have been going through this together, and those who have gone before us who serve as living proof of this nightmare, and the happy place on the other side. We are going to raise awareness! We are going to make sure that no mom is given a tube of topical steroids without being told of the very real danger of topical steroid addiction! We are going to share our stories so that the suffering of our children (or ourselves) is not in vain!
The National Eczema Association, after talking with ITSAN.org for a few years, launched a task force committee to research Topical Steroid Addiction. This is huge! And even more awesome is that we heard through the grapevine yesterday that at a recent conference, they discussed that they did, indeed, find that TSA is a real condition. We're so excited to see their official paper on the matter and to finally end the pointless and nasty bickering I've seen between eczema moms over the months. So many have claimed it can't happen for so long, and ridiculed the moms who refuse steroids, and it's time for that to stop. Our goal should be to empower each other. To make sure that every last person on this earth knows ALL the risks and benefits to each treatment. Only then can you make a truly informed decision. Our job should be to inform and then support, regardless of what the parents choose for their children at that point. At the end of the day, the truth is that not every child or adult who uses topical steroids will get addicted. Mine did, and it's tough. If I had been given this information, I don't think there is any chance I would have used that hydrocortisone in November and December, but hindsight is always 20/20, I know.
ITSAN.org is the best place to start. There are testimonies, pictures, tons of research and information and a great forum. Go forth and visit! :)