We are your average family of four, minus the pets, living in your bog standard English house in an ordinary town in the East Midlands. My husband is in his late thirties, I'm in my early thirties, and our two girls are, on this day in early July 2014, five years old and nearly two.
Our five year old, Iris, has a severe peanut allergy and an intolerance to cow's and goat's milk, which has de-escalated from a full blown allergy to cow's and goat's milk. Our toddler, Beatrice has an intolerance to eggs and peanuts--her allergy tests to both of these came back negative at six months old, but she will be retested before she starts nursery next year so that the school can be accurately advised of her dietary requirements and any cautions they need to take with her.
Our experiences with eczema up to 2013
Iris first developed eczema in a very mild form on her face around six months old, in conjunction with the as-then undiagnosed dairy and peanut allergies. After trying the various creams that GPs prescribe by rote for eczema (Aqueous cream, E45, Cetraben, etc) and finding they only made the problem worse, I did some research and discovered a lot of positive commentary around 100% unrefined Shea butter. I bought a large tub off Amazon, applied it whenever she looked dry or red, and within two months (and in combination with a diet that excluded dairy and nuts), her skin had cleared completely and her eczema didn't return for about a year.
When it did come back, it was in the rather classic presentation in the creases of the knees and elbows. It was mild again, we used the Shea butter, and as she wasn't an avid scratcher, we didn't really give it much thought. GPs prescribed Hydrocortisone, which I used occasionally, but all told, we weren't especially worried. Even when she developed two more patches in the creases under her bottom, we put it down to my mother-in-law's washing powder and carried on as normal.
But the eczema didn't clear up, and by 2013, her wrists were looking sore and it had become angry enough that GPs no longer described it as mild, but moderate.
Bea was always an avid face-botherer, from birth. I still don't know to this day if it was itchiness, or simply busy hands in her infancy, but we swaddled her at night for 10 (yes, TEN) months in order to help her to sleep in her first year of life. She was a good sleeper, unless her hands had anything to do with it. Around four or five months, she did develop some small patches of dry, flaky skin near her hairline, and after a holiday in America, a visit to the GP for an unrelated matter revealed a surprising diagnosis--the very faint, pinprick red rash on her upper trunk and neck was, apparently, eczema. Being used to seeing it in the classic presentation in the creases of joints, I hadn't realised that Bea had any problem at all, until the GP pointed it out.
The 'skin expert' GP in 2013
In February of 2013, I first read about TSW. A friend of mine in America had started the process for herself and was documenting it on Facebook, so I asked her about it and she gave me some details. I told her that Iris' eczema seemed to be getting worse and spreading despite using increasingly potent steroids, and worried briefly that she might have this TSA condition too. However, at that time, it was a minor worry, and I wasn't prepared to take her care out of the hands of medical professionals and into my own. And then it seemed my prayers were answered: following the retirement of a GP at our surgery, a new one joined the practice, one who was, apparently, a skin expert. It was this GP that identified Bea's eczema a month later.
I put my girls' skin care into her hands, hoping that with her extra knowledge of dermatology, she would be able to achieve for my girls what other GPs hadn't thus far: control of their eczema. I was ready to follow her advice to the letter, so we switched from Shea butter to Epaderm for their emollient, upped the steroids to Betnovate, and attempted a 'hit it hard and then step down' regime. Ironically, the philosophy was much the same as Dr. Aron's, but it just didn't work. As soon as I would step down or stop the steroid, the eczema would flare right back up again, often worse than before, and we'd have to step right back up for longer. We didn't seem able to have the prescribed two week break in between applications, and though I received a lot of compliments about how well moisturised the girls were, their skin was spiralling out of control. The point at which Iris developed the rash across her collarbone, buttocks, lower back, and fronts of her hips, all in the short space of a month, I decided I'd had enough. Iris had NEVER had problems with eczema in these areas, but in less than a year, at least 50% of her body was covered--her arms were like sleeves of eczema from the elbows to wrists. Bea was covered head to toe, so we were having to apply the Betnovate all over her wee body. Worst of all, the break from the eczema that we had been experiencing when using the steroid was no longer sacred: the eczema was flaring through even while we were applying the steroid religiously. It was heartbreaking.
And so, I returned to the horrible idea of TSW. The very thought that TSA might be the reason my girls were not improving was panic inducing--it quite literally made my heart race, the blood pound in my ears, my breath catch in my chest. I visited the ITSAN site, even posted once about my fears for my girls, and the idea of my girls suffering in the way that some of the parents on that website described was the stuff my nightmares were made of. I would have done ANYTHING to avoid that. I'd have chopped off my own arms if it would have made a difference. I mean that.
But we couldn't carry on as we were--that was evident enough. We were referred to a consultant dermatologist at the hospital, but the appointment we received was for three months later. We couldn't continue with a method that was, at best, not working, and at worst, aggravating the problem. So we stopped the steroids, and we ditched the Epaderm. We returned to Shea butter, tried every suggestion I could find on the internet--apple cider vinegar, various magic balms, hazelwood necklaces--I must have spent £200 I couldn't afford on potential solutions. On hope. But in two weeks, their skin flared dramatically, as expected, they scratched constantly, and my toddler couldn't sleep for more than two hours in one go at night. I had never felt so trapped in my life--I couldn't believe that modern medicine could fail my girls like this--how could something so dramatic, so apparently unusual as TSA, happen in our average, bog standard, ordinary family?
Looking back, it hadn't. In the two weeks my girls were off steroids, their skin deteriorated, certainly, and they were miserable, certainly, but they never developed any of the signs and symptoms of Red Skin Syndrome--no red sleeves, no shiny, sunburned looking skin, no inability to control body temperature, none of it (though many would argue that these are as much signs of uncontrolled, severe eczema as these are signs of TSW, but that's another post for another day). They just had an awful, itchy, debilitating rash. But with the dread of TSW hanging over us and the total uncertainty of the future, it felt like we were in no-man's-land, with an unbearable scenario facing us on either side of the battlefield.
And then, one fateful Friday night, I was reading the posts on one of the Facebook eczema sites I had joined, feeling my stomach drop every time I read yet another post insisting on the evils of steroids and the necessity of the pain of TSW. Halfway down the page, however, I came across a post by one mum asking another mum to recap her experiences of Dr. Aron as she was intrigued about what she had heard of him. This mum dutifully replied with unparalleled enthusiasm about the miracle Dr. Aron had worked for her daughter's eczema. Yes, he uses steroids, a comment which, at the time, made my heart seize up, having been so inundated with the anti-steroid message from the TSW proponents. But he dilutes them, and he manages to achieve what the NHS docs promise but can't deliver: he steps down the dosage. He tapers, and for this woman's child and many others, the tapering resulted in a regime of Diprobase alone after six months. No steroids. Clear skin. Could it be? But surely if a child had signs of TSA (like worsening eczema while using increasingly potent steroids), then a regime that required the use of steroids would be not just ineffective, but damaging?
I scrolled further down the page, and as if by providence, came across another post mentioning this Dr. Aron. This time, it was a post from a woman who had attempted to put her child through TSW in the hopes that it might improve the poor girl's horrific eczema, but after an entire year, there had been no change. The girl had all the signs of TSA and TSW, but she made no progress with a steroid free life. She just suffered. Terribly. Her mother then discovered Dr. Aron, engaged him for treatment, and her daughter was like a different child within days.
It sounded too good to be true. Too easy. But there were several other parents commenting on the post about how Dr. Aron had worked miracles for their children too. Insisting that he had knowledge that NHS doctors did not. Promising that no child need suffer.
And so there it was. An out. A way off the battlefield without casualties.
Up next: Taking the Leap of Faith and starting therapy