From The Boy, the Greek Fire, and Me
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 palm of his hands that 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….weeping, but never scabbing. His hands and ankles were swollen, and his eyes were puffy.
Sometimes the redness would go a mottled purple color, which frightened me. All his lymph nodes were up over his whole poor ravaged little body.
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, it would literally run off him, sometimes so much around his eyes he could barely even see.
Now reading that I guess the assumption must be that my boy must have been ill? Perhaps you would think to look at him 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 Eczema, it was Red Skin Syndrome.
I guess our story has been a typical one for many patients with Red Skin Syndrome, my son was diagnosed with Eczema under a year old, it was no big deal, we were prescribed various emollients, and a tube of 1% hydro-cortisone, we had various allergy tests done, we saw dieticians, nothing showed up, and using the hydro cortisone 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, 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 again the eczema was becoming harder to control so we stepped up again, and then when he was 7, we stepped up again.
By March 2011 something was clearly wrong. No matter how much of the steroid cream I used, nothing would clear it, 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 the lymph nodes became enlarged. I went back to the doctor in a panic, and this time we were prescribed our first course of prednisilone, 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 prednisilone, we were prescribed more steroids, we kept going back to the dermo’s by this point I was begging for help, I would sit and cry in the doctors office. About this time the dermo’s decided that perhaps they would try the immuno suppressant drugs, and I came home with a tube of pro topic 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 increase of steroid use and his deteriorating condition. I was told I 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 prednisilone, and my husband and I decided from that day onwards we were going to try and keep away from the steroids just to try and see how my son would be without the use of any kind of steroids. To say what followed was a shock would have been the understatement of the decade.
At some point soon after I stumbled across Kelly Palace’s website, 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 actually my boy wasn’t ill, he was just going through topical steroid withdrawal and addiction.
Although the change wasn’t 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 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. 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, some people get very bad oedema, (thankfully we only got some of that), and copious and hideous weeping. The fluid would literally run off him in rivulets (again not everyone gets that), once you have got through that phase you progress to the shed, when 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. Atrophy is pretty spectacular too. We literally did not have one good day for 16 weeks. Basically these flares repeat until the body 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 ITSN support group was invaluable, however it has left me angry that this syndrome is not widely acknowledged. I only had one dermo even admit that it existed and even then she said that my son could not be suffering with it as it is so rare. And actually the response from other parents (whom also had children with eczema) 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.
And therein is the rub, I don’t think actually it is rare. I think it is far more widespread than the medical community can recognize, and until more forward thinking and enlightened Doctors recognize this, there will be more people suffering with ‘incurable’ Eczema.
To add as a postscript, We are now into our 8 month of withdrawal. Boy now looks pretty normal, he still has eczema and some scratch damage but is living life again to the full without his skin holding him back, his skin is better than it ever was even whilst still on topical or oral steroids, and actually I am pretty confident 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 will always have eczema, but he will no longer be defined by it.