July 2012, One Mom’s Eczema Journey: To Hell and Back

I have a little boy, a very typical little 8-year-old boy, who loves football, Star Wars, any joke involving gross bodily functions, and Mario Kart. What was not quite so typical was his appearance in October 2011.

My boy was a scarlet red all over his entire body, with the exception of the palms of his hands which remained glaringly white. The skin of his neck had gone, and you could see what I assumed to be the capillaries underneath. Sections of his body were bleeding and oozing, but never scabbing. His hands and ankles were swollen, and his eyes were puffy. Sometimes the redness would turn a mottled purple color, which frightened me. All the lymph nodes in his poor, ravaged little body were swollen.

He could not walk. He could not even turn his head. He could barely eat, as opening his mouth became too difficult, and his ears hurt constantly. He shivered no matter how hot the house was. I could walk around in shorts and a t-shirt, and the poor boy would be swaddled on the sofa under blankets. The weeping some days was unreal.  Fluid would literally run off him–sometimes so much around his eyes that he could barely even see.

After reading this, I guess the assumption must be that my boy must have been ill? Looking at him, perhaps you would think he had been badly burnt?

Well, what would you say if I said that the dermatologists considered that my son just had ‘eczema’. Incurable, extensive, badly-managed eczema? What my son had was not just incurable eczema; it was Steroid-Induced Eczema or Topical Steroid Addiction (TSA). The process to recover from TSA is called Topical Steroid Withdrawal (TSW) or Red Skin Syndrome (RSS).

I guess our story has been a typical one for many patients with Red Skin Syndrome. My son was diagnosed with eczema when he was under a year old. It was no big deal. We were prescribed various emollients and a tube of 1% Hydrocortisone. We had various allergy tests done, saw dietitians, but nothing showed up. When we used the Hydrocortisone, the eczema went away beautifully.

Then, over the next few years, the eczema was always there in the background but never an issue. By the time he was 3, the 1% was no longer strong enough, and we moved on to 2.5%, always stepping up and stepping down diligently as we were taught. Again the eczema was well-controlled:  not an issue, not a problem. Perhaps I spent more time with him than I did with my daughter because  the whole bath/cream/dress thing took a bit longer. It may have been inconvenient but not an issue. By the time he was 5, the eczema was becoming harder to control again, so we stepped up the topical steroids again. When he was 7, we stepped up again.

By March 2011, something was clearly wrong. No matter how much of the topical steroid cream I used, nothing would clear his eczema. At this time we were using Betnovate and Eumovate, and still the eczema was spreading and getting worse. My son was cold all the time, and his lymph nodes became enlarged. I went back to the doctor in a panic, and this time we were prescribed our first course of oral corticosteroid, Prednisone.  I didn’t want him to have this, but the GP assured me it was the best way and that they would arrange for me to revisit my dermatologist.

Between then and September 2011, my son had 4 tapering courses of  oral Prednisone. We were prescribed more steroids; we kept going back to the dermatologist. By this point, I was begging for help. I would sit and cry in the doctor’s office. About this time, the dermatologists decided that perhaps they would try the immunosuppressant drugs, and I came home with a tube of Protopic, but I was uneasy. I asked repeatedly if my son may have developed an allergy to the steroids, as I was beginning to make the association between the increased steroid use and his deteriorating condition.

I was told I was being ridiculous, it was unheard of, that it must have been my fault, I wasn’t using the steroids correctly, I wasn’t using enough. Instinctively, I knew something was amiss. I cried myself to sleep at night, scared that he had some kind of awful, undiagnosed illness.

That September, I decided enough was enough and stopped all steroid use. We tapered down our last course of Prednisone, and my husband and I decided from that day onward we were going to try to stay away from the steroids just to see how my son would be without the use of any kind of steroids.  To say that what followed was a shock would have been the understatement of the decade.

At some point after we stopped all corticosteroids, I stumbled across Kelly Palace’s website “Addicted Skin”, with the links to Dr. Rapaport’s research, and it was a real eureka moment! It was a massive relief for me to see that my boy wasn’t actually ill.  He was suffering from Topical Steroid Addiction and was now in Topical Steroid Withdrawal.

Although the adverse effects of stopping corticosteroids didn’t happen overnight, it was pretty quick. You do get some very alarming symptoms, I would say, within a couple of weeks, and it is only fair to say that the withdrawal is truly hideous.  Thankfully, children tend to do better than adults, but you are still looking at roughly a minimum of 16 weeks of total, unmitigated Hell.

 

red skin syndrome child

 

It begins with the skin becoming red everywhere, even in places where you have never used steroids or previously had eczema.  It is accompanied by problems with regulating temperature, very swollen lymph nodes all over the body, and copious, hideous oozing. Some people get very bad edema, but, thankfully, we only got some of that. As for the oozing, the fluid would literally run off him in rivulets. (Again, not everyone gets that.) Once you have gotten through that phase, you progress to the shedding phase where masses of skin will come off. This is very uncomfortable and tight, and it can also be accompanied by joint pain.

Obviously with children, the chances of infection increase, as by their very nature, kids will scratch and rub.  The lichenification (thick, leathery skin) or elephant skin is pretty spectacular, too. We literally did not have one good day for 16 weeks. Basically, these flares/phases cycle repeatedly until the body heals and learns to regulate itself.

Initially, I tried to keep him at school, but it just wasn’t possible, so he missed three months of schooling.  The impact on a family cannot be underestimated; we had no life whatsoever for 16 weeks, just hospital and doctor visits.  The change for the better is very gradual. One of the founders of ITSAN likens it to watching hair grow: you do not see it happen, but it does all the same.

Thankfully, the support of Kelly Palace, our family GP, and the ITSAN support group was invaluable. However, it has left me angry that this syndrome–Topical Steroid Addiction & Topical Steroid Withdrawal/RSS– is not widely acknowledged. I had only one dermatologist admit that it existed, and even then she said that my son could not be suffering with it because it is so rare.  Actually, the response from other parents who also had children with eczema and were still using topical steroids has been shocking at times. I was labeled “deluded”, “abusive”, and “neglectful” for making the incredibly hard decision to withdraw the steroids with the awful foreknowledge of what was likely to come.

After weeks of living a literal hell on earth, there’s a drastic improvement! He’s still healing. And therein is the rub: I don’t think actually it is rare. I think it is far more widespread than the medical community will acknowledge, and until more forward-thinking and enlightened doctors recognize TSA/TSW, there will be more people diagnosed with and suffering from ‘incurable’ eczema.

To add as a postscript, we are now into our 8th month of withdrawal.  Boy now looks pretty normal. He still has eczema and some scratch damage but is living life again to the fullest without his skin holding him back. His skin is better now than it ever was, even while still on topical or oral steroids, and I am pretty confident that even the “bad” areas like the wrists and hands will be much better in time.  The flares still happen occasionally, and it is annoying when they do. However, each flare is shorter than the last. My son may always have eczema, but he will no longer be defined by it.

 

red skin syndrome hands

 

Further postscript, January 2015

Well, life has certainly moved on apace since I wrote this!  The boy is now 11 and is doing amazingly!  His skin has gotten to the point that it is no longer a factor in our everyday decisions. Those who have a severe eczema kiddo will know what I mean, as every single decision you make is based on probability of flare up, coping with flare ups, and the extra work that goes with an eczema kiddo.  Now, my son’s skin is normally totally clear.  The scratch damage and elephant skin has totally gone.  He occasionally gets flare ups (normal eczema type redness/rash) on his wrists, and this time of year he can get a sore spot under his nose–much like every other child in this climate this time of year from what I can see!  When he gets patches of eczema, it’s really no biggie, and they pass quickly.  He will probably always have sensitive skin, but it’s never an issue.

In 2012 we were able to take our first-ever holiday abroad (was never an option before because his health just wasn’t up to it) and have traveled extensively since.  The boy has gotten straight back into the sport he loves, running, swimming and even rugby-waist-high deep in mud. Life is so, so, so much better than I ever thought possible when I was told there was no hope of anything better.

 

healed from tsw

Boy lives life again without topical steroid dependence!

 

I still retain a bit of a mistrust and anger towards some doctors and derms, but even that is fading with time (not sure it will ever pass completely). I am so sad that not more is being done to help those suffering.  Further studies on topical steroid addiction and withdrawal are desperately needed; there has to be something that can help those through withdrawal. It just needs to be found. Until that time, we will keep seeing children, like my poor Boy, suffering.  This is not, nor ever will be, acceptable.