Setbacks, spring, and success!

Following the initial success of their treatments, the roads to recovery diverged for my children.  They were still travelling in the same direction, but the smoothness of the ride and the speeds at which they were going changed.  So I'm going to split up the reporting while I take you through spring, beginning with Iris, as hers has been the more straightforward and easiest of the two journeys.

IRIS

Iris has only had one proper flare in the five months that she has been under Dr. Aron's care.  The backs of her knees kicked off in conjunction with a fever bug she picked up in the middle of March. Compared to previous flares, this was NOTHING.  The spread was minimal and the itchiness was mild.  Still, it bugged me, and increasing the applications from three times a day (where we were at the time) to four to five didn't seem to be shifting it.  So, we contacted Dr. A, sent a photo, and asked for advice.  Strangely (or so I thought at the time, still not fully cognizant of Dr. A's brilliance), he recommended Aqueous Calamine Cream, which can be bought for a couple of quid over the counter at any pharmacy. To say I was sceptical would be a massive understatement, but of course we gave it a go.  Three times a day for five days.  The backs of her knees dried right out and I was so sorely tempted to put diprobase or some other moisturiser on them, but she wasn't complaining and that wasn't part of the procedure, so I waited.  Lo and behold, within TWELVE hours of reapplying the Aron mixture, the eczema had gone and her skin was perfect again.  

And that has been it in terms of proper flares.  She has had a tiny reaction to suncream on her arms, which lasted less than twelve hours--we put her cream on after the bath and the next morning there was no sign of rash.  In the intervening four months since this flare, she has worn (a different) suncream, had bare arms and legs at school for months, and accidentally ingested nuts, resulting in an evening spent in A&E and her skin has reacted to NONE of it.  This was all unheard of in previous years--foods that she was intolerant or allergic to seemed to set off her eczema, bare legs at school were impossible with scratchy carpets and all the other little nasties that those buildings harbour, and suncream was a yearly battle.  Now she looks like every other kid.  Hell, her skin is BETTER than loads of other kids.  Who would ever have thought it?  

So spring was a non-entity for her.  By June of this year, we were told to step her down from the one application per day that she had been receiving through May to one app for every two days out of three.  

BEA

Bea has had a slightly rougher time than Iris, though at no point during any of her setbacks did she ever return to the levels of eczema that she was at before we started with Dr. A.  There was also a problem with her original cream mixture in that the steroid did not blend smoothly with the other components, and so it would be, for want of a better word, slightly lumpy.  These lumps appeared to me to be more prominent at the top of the pot of mixture and until we got to the bottom half of the pot, her skin would be fantastic.  We got through about three pots in the first six weeks before I noticed the pattern and informed Dr. A, who changed the steroid and increased the Diprobase.  

Her flares have mostly been confined to her problem areas: her wrists and lower inner arms, ankles, and neck.  She has, on one or two occasions, had minor flares on her legs and trunk.  Her whole body has never flared all at once like it used to.  All of these flares were easily traceable to either teething (she grew her last four molars between March and mid-May, so we're done with teething now, thank goodness!) or illness.  You know toddlers, they are more or less snotbags from winter through spring. With each flare, we increased the applications of cream for four to five days, sometimes a week, and then stepped back down when things were calmer.  By the start of May, and in conjunction with her new mixture, which seemed to completely topple the last of the eczema outposts, her skin was clear as a bell, everywhere, and she was on two apps a day.  

Here are photos of the girls taken on 31 May to be shared on the Facebook group: 

THE CONSULTANT

Three months after being referred, my girls were finally seen together at the hospital for their appointment with a dermatology consultant.  I brought in the photos of them before Dr. Aron's treatment and he was able to see in person the incredible change in their skin, having gone from dreadful to absolutely perfect (apart from mild sunburn, this was before I'd found the suncream that worked!).  He wasn't remotely impressed.  He didn't really seem to get it, if I'm honest.  I think he thought that perhaps their skin had just gone into remission on its own.  If anything he tried to warn me off using Dr. Aron because the cream was in pots and not pumps, which could spread germs.  He seemed to be missing the wood for the trees, and it was really disheartening.  I had hoped he would celebrate the obvious success we had had and show an interest in the methods used to get there, but he wasn't bothered.  He would not prescribe the components of the cream for me (I had hoped to cut costs by either mixing them myself or having them mixed locally) and insisted we needed to be back on the Epaderm and using different steroids as well as zinc bandages.  I nodded and thanked him for his time.  I can't see that we will be going back there.  

POLLEN STRIKES!

The hayfever season has been an interesting one this year.  I suffer VERY badly and this year has been exceptional.  I have exhausted all of the tablets available, nasal sprays, eye drops, and I have only been just about functional for most of June.  Normally, by July, things calm down a bit, but that has not been the case this year.  

Interestingly, the minor changes I have noticed in my girls' skin has coincided exactly with a massive hayfever attack on my part.  Iris has developed a strange dry rash around her mouth, complete with dry lips (she has never had eczema in this location), for which Dr. A has suggested Diprobase ointment, which works really well.  I am suffering similarly, with swollen, cracked lips and the feeling like I have a layer of skin that needs to come off.  I know that it is related to hayfever and pollen as the three times I have experienced this bizarre lip thing I have also struggled to keep the sneezing, snotting, watering, and itching in check.  

Bea has experienced some dryness on her face, though no rash.  She has also had some isolated red spots on her legs (and one or two on her arms) that have come and gone through the month of June.  Dr. Aron has said they look like isolated spots of infection, and has suggested treatments for them, which we have followed.  They always clear up and they don't seem to bother her, so I am trying to stay fairly relaxed about them.  Their appearance seems to coincide with rises in pollen levels too.  It's quite bizarre really, but reassuring to think that there is a known cause for these changes.  

THE OTHER SHOE

So now we are pretty much up to date, and the purpose of this blog from here on out will be to check in when anything interesting happens or otherwise every two to four weeks.  Iris is due to come down to one app every one day out of three from August, and then I'm guessing that she will be off the cream.  Nothing seems to be penetrating her skin, and long may it stay that way.  However, we have a winter ahead of us, so I'm not proclaiming complete and total success until we've got through that without a total reversal of fortunes.  

Bea continues to get the odd minor flare on her wrists, largely because they are exposed and used often, what with being connected to her hands!  Dr. Aron has recently prescribed a teeny pot of a stronger mixture for these trouble areas, and after two days, her skin looks totally normal.  Not a surprising result from Dr. Aron, giving his track record, but a relief all the same.  Bea tends to itch in the heat, regardless of whether she has a rash, so we are taking summer with caution.  She is certainly the more sensitive of my two girls now, which I would at this point put down to youth.  As a result, we don't use suncream on her.  Thank goodness we don't live in a hot climate, so she can wear leggings all summer.  I've bought her some special sleeves made out of UV 50+ material, imported all the way from America, and they are brill for covering her arms during the midday period.  And she is always in a hat. We were going to drop her down to one app a day in June, but with suggestions that we've had that she's reactive to some pollens, Dr. A has said we should keep her on two apps for now.  Who knows what winter holds, but in the face of that uncertainty, I am reassuring myself that Dr. A has not failed us yet!

I realise our story has more than a bit of the fairytale feel about it thus far, what with the fortuitousness of our discovery of Dr. A and his treatment and the miraculous early results, and sceptics out there might be disbelieving.  Fair dues, I'm a sceptic.  But I'm also telling it straight.  It has only been possible for me write these posts up to date with an element of calm because I know where they lead, which is to this place of relative peace.  

But I'd be lying if I told you that I'm not still waiting for the other shoe to drop.  It's not like it was in the early days, when every little change in their skin, and certainly every flare, had me convinced we were going backwards.  The more time that passes and the further we get from those bad days of this past winter, the less I worry, the less I stress.  But it is still there occasionally, that little niggly thought in the back of my mind--what if we end up back there again?   Part of me can't believe that we could ever be totally free of the threat of eczema.  And to be honest, we probably won't be free of the threat: there is no cure for eczema and sensitive children are just that, sensitive.  Dr. A has said this, and I'm under no illusions.  So there will always be a threat.  

But that other shoe?  Whenever that rogue negative thought flits into my head, I remind myself that the blooming shoe is still firmly in its place, and it really doesn't show any signs of dropping.  I have yet to hear of Dr. A failing a patient.  And I have yet to be convinced that steroids are evil.  And I have now met so many parents through the Facebook group who are singing from the same hymn sheet as me, and their children are thriving when once they weren't.  And Iris appears to be in remission, or heading well for it.  And Bea is happy and growing and flourishing.  And the sun is shining.  And the birds are singing.  And we are living.  

-Bec  

Taking the Leap of Faith and starting therapy

I would imagine that if you polled a group of parents whose children are under the care of Dr. Aron for their eczema, the majority of them would tell you that deciding to engage him takes the sort of guts you wouldn't imagine necessary for something so simple as sending an email with a few photo attachments.  But it does.  So many of us were already drowning under the stress of our children's condition and the apparent hopelessness of the NHS treatment; add to that the volume of the very vocal TSW proponents and we start to question whether treatment for our children, in spite of their considerable suffering, could be a dangerous thing.  

I spent the weekend following Fateful Friday drawing up lists of pros and cons, to-ing and fro-ing with a sensible friend who, by good fortune, was up for a visit, and trying to imagine and weigh up the consequences of both going with Dr. A and staying away from steroids.  On the con side, there was a long list, which included worries like: use of steroids, non-conventional practice, cost, what if it doesn't work?  On the pro side there was only this: he's obviously a real doctor (I checked!) who isn't in it for the money (his fees are a third of what he could charge in private practice) and he has, as far as I could tell, a 100% success rate.  

So I sent him an email.  I poured out my concerns onto the page and hoped he would allay them for me.  I wanted him to say: you can stop worrying now, I'll help your girls.  

He wrote me back within 12 hours and invited me to call him that evening.  I did, not knowing what to expect.  He asked me whether I had seen the videos on the website and read the information, which I had, and then explained that he was not going to try to convince me to use his therapy.  

That was unexpected.  I'm going to humble myself here by admitting that I am not always the easiest of parents/patients: I wanted answers, I wanted reassurances, and I wanted a figure of authority (i.e. a doctor!) to PROMISE me that this was the right choice to be making.  He wouldn't do that.  He told me that I had to believe in it myself; I had to come to the decision to put the girls into his care on my own steam.  I had to take a leap of faith.  

I'm not good with leaps of faith.  I'm a researcher and an analyser.  I work with facts, not faith.  But ultimately, it came down to this: I could choose a path that would DEFINITELY result in my children suffering, or I could go with Dr. A, keeping my girls under the eye of a medical doctor (which was always important to me) and maybe, even probably, get the results I was after without the agony, if I could accept the uncertainties.

So, we leapt.  In the end, despite my inner turmoil, it was an easy, obvious choice.  

I wrote back to Dr. Aron to tell him we wanted his help.  I sent a series of photos of my girls, not all of which I will post here due to the varying degrees of clothes they were wearing.  But here are a few: 

 

The camera was very forgiving on some of these, particularly of my eldest daughter's legs.  I haven't included the one of her upper legs and buttocks for obvious reasons.  It's painful to remember how much worse they looked in person.  These were all taken on the Saturday after Fateful Friday, two days before I formally engaged Dr. A.

The fee I paid was £80/child, and initially, the creams cost £40 each, but £5 overnight shipping from Landy's Pharmacy in London, with whom Dr. A has an arrangement to mix creams for his patients at a reduced cost.  I say initially because my youngest daughter's creams changed a couple of months in and now cost £45, but we get almost 100g more, so the value is the same if not better.

Amazingly, revolutionarily, it seemed, my daughters were treated as individuals by Dr. A and prescribed different creams (and later different regimens, though initially they were on the same schedule).  Where on the NHS my four-year-old, 14 kg child and my 19-month-old, 9 kg child had EXACTLY the same prescriptions (and had done since my youngest was 9 months old), with Dr. A, their treatment was different.  Both creams had the same base (Diprobase) and the same antibiotic cream but, critically, different steroids.  Later, they would have the same steroid but mixed to a different ratio.  I am not going to share the exact components of the creams simply because I don't want to tempt anyone to try this at home without medical guidance.  Dr. A knows his stuff, plain and simple.  I'll talk about that in the next post, because he really does, and it should bloody well be celebrated.  I wouldn't want anyone trying to replicate what he does without knowing 'the stuff' as well.

I paid the consultation fee on the Monday, received the prescription on the Tuesday, rang up Landy's and ordered it immediately, and it arrived on the Wednesday at lunchtime.  I gave Bea her first application the moment I got it out of the box, and Iris received hers as soon as she got home from school.  Dr. A had asked me to keep Iris off school in order to apply the creams five times per day for the first nine days, so I asked the headteacher to mark her absences as a 'B', which means the child is being educated elsewhere and doesn't count against their attendance score.  And so we began.

On Thursday night, Beatrice slept for four hours in one stretch, woke for a short while, and then slept for another four hours.  The next night she slept for six hours in a stretch, and by the end of the weekend, she was going all night.  Iris slept all night long from Thursday night.  Here are the pictures I sent to Dr. A of the girls on 3 March, five days after starting treatment.

 










A definite improvement, but what the camera doesn't show is that the texture of their skin was soooo different after only a few days.  Softer, more supple.  No more sandpaper, no more bumps, and the dryness was amazingly minimal considering we had gone from Shea butter and, before that, Epaderm, to Diprobase as the emollient constituent.  What a difference it made to have such a grease-free mixture to apply--no more soggy hair, no more sticky clothes!

A good beginning, then.  We expected (and met) some bumps in the road to come (far more with my youngest, because, as every parent with eczema knows, those babies and their snotty colds and burgeoning teeth are just a recipe for flares), and I will detail these in the next post, but within two weeks, when conventional NHS treatment would have been failing dramatically, we were stepping down applications to 3-4 times daily.  More importantly: THEY HAD NORMAL LOOKING SKIN!  It was starting to be hard to remember where to apply the cream because soon after the sandpaper feel faded, the darker pigmentation started to go.  Not a difficulty that I ever lamented!

And, after all the stress and strain, not a choice I was regretting.  We had leapt, and landed on our feet.  


-Bec



Next up:  Spring, setbacks, and success!

Who we are and how we came to find Dr. Aron

Who are we?

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.    

The Nightmare

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.  

The Light

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.  

A choice.  

 -Bec

Up next: Taking the Leap of Faith and starting therapy 

Why Dr. Aron's eczema treatment?

If I'm being perfectly honest, I don't really want to write this blog.  Being the mother of two small children, I don't have a lot of spare time and energy, and I don't really want to go back to that dark place we were in so many months ago when my children's eczema was at its worst.  It was a desperate, terrifying, painful time, and I have no desire to relive it.

But I'm going to.  Eczema is on the rise in modern society, and the severity of the condition seems to be following the upward trend as well.  I've been in the eczema groups on Facebook, I've searched the internet looking for solutions: I know there are a lot of parents out there in that desperate, dark, painful place that we were in, and so I'm doing this blog for you.  It's the right thing to do; it is exactly the sort of lifeline I was looking for all those months ago.

Instead, I found A LOT of blogs about Topical Steroid Addiction (TSA) and its consequence, Topical Steroid Withdrawal (TSW), also known as Red Skin Syndrome.  I found the ITSAN website.  I found very vocal parents on eczema support groups insisting that the only way to 'cure' severe eczema that appears to be worsening or not responding to topical steroids is to accept that the steroids are causing the problem and to quit them, cold turkey, thus putting the body through TSW.  I'm not going to go into the details of TSW on this blog--there is ample information out there on this topic.  It is enough to say that it is a gruelling, horrific process.

Dr. Aron's therapy is the antidote to TSW, in  my opinion.  PARENTS: YOU HAVE A CHOICE!  It is not TSW or bust: you can control and, in many cases, put your child's eczema into remission without having to put your child though the hideous experience of TSW.  Don't be fooled: there is NO cure for eczema.  Some people are just atopic and will always be that much more sensitive and prone to conditions like allergies, asthma, and eczema.  But that doesn't mean atopic individuals have to suffer with eczema unchecked.  Dr. Aron's regime achieves the desired aim of TSW without the pain or the itch.  In other words it treats and controls severe, otherwise resistant eczema.  The approach is beautiful in its simplicity and even more fantastic in its results: check out his website for more details of how it works and a few video testimonials www.draron.com.  We have also started a group on Facebook for parents who wish to talk to other parents whose children are under the care of Dr. A: Dr Aron Eczema Treatment Discussion Group.  It is a private group, so you will have to request to join.

I am in no way affiliated with Dr. A, other than by being the mother of two of his patients, and I get no financial gain from publishing this recommendation.  I am doing it because I believe so strongly that he can help those people who are at the end of their tether, and especially those who think TSW is the only option left to them.  It isn't: there is light in that dark, desperate world.

-Bec