UPDATE - SEPTEMBER 2015

I know it has been a ridiculously long time since I last updated this blog, but, as usual, that is because there is very little in the way of eczema to discuss!  But for anyone following my children's progress and wondering how they are doing 18 months down the line from starting treatment, here goes: 

IRIS

Iris is now six years old.  She stopped all regular use of medicated creams in January of this year.  She had the odd small spot of eczema crop up but these all went with either one application of the cream or a bit of moisturiser.  She hasn't had any eczema at all since roughly June and we do not use anything on her skin unless she says she's feeling dry, which is pretty much never.  She has been swimming regularly for about a year now and has started weekly swimming lessons this month.  You would never know from looking at her that she ever had eczema.  I.N.C.R.E.D.I.B.L.E.

BEA

 
Bea is now three years old.  We slowly fazed out regular use of the medicated cream everywhere but her hands and wrists this summer, so I couldn't tell you exactly when we 'stopped' (maybe end of May?), but we have.  We do apply the cream to her hands and wrists as necessary, so from week to week she might have one daily application or twice weekly--it all depends on what she's been getting into.  That said, the 'eczema' we are treating on her hands is just that: boring, mild, uninteresting eczema.  A bit of red, some slightly dry skin, very little itch.  

As far as flares are concerned, she's not had any flares at all for months--I'm struggling to remember when she last had a full body flare.  She's had the odd patch at the top of her legs or on her right knee or ankle, but for at least the last month or so she hasn't had any eczema anywhere apart from her hands/wrists.  Amazingly, she has had a snotty nose this week, courtesy of beginning Nursery, and spiked a massive temperature yesterday...but her skin has remained unchanged.  This is a first for us.  A welcome first!

And don't think we've made it easy for either girls' skin: we've spent the summer camping, visiting beaches, digging in sand, paddling in the sea, scootering, bike riding, swimming, sweating, rolling around in grass, NOT bathing every day (!), wearing lots of different types of sunscreen...we aren't living in a bubble here, people.  We are just living.  Simple as.     


So, in summary, that's two girls who are essentially MEDICATION FREE.  No side effects, no drama, just clear skin and healthy children.  Thank you Dr. Aron!  

I'm not sure what the winter will bring, but I have every confidence that we are done and dusted now: eczema is no longer anything of a threat, or even much of a feature in our lives.  We may get the odd flare here or there, but we'll treat it and not worry about it disrupting our  lives.

I do not plan to update this blog beyond this point unless something spectacular occurs. Thanks for reading folks, and if you are hesitating at all about trying this treatment, don't.  This is it.  The end of the eczema tunnel: welcome to the light!  

Over and out.  

Springtime, one year on!

Still doing FANTASTICALLY well.  Iris continues to thrive with beautiful skin and no creams or medications.  She's had some delightful sneeze laden days since the pollen count has been creeping up, but no problems with her skin at all.  These days her life is filled with the excitement of losing teeth, Easter Egg hunts, and learning to ride her bike without stabilisers/training wheels!

Bea is also going from strength to strength.  With no more antibiotic in her mix since the end of January, she has now dropped to one app every five days.  She's doing just peachy on it.  She was hospitalised due to respiratory distress a few weeks ago and had a tiny flare whilst in hospital (not surprising as she often flares when ill).  We didn't have her creams with us, but by the next morning the flare had subsided of its own accord.  Absolutely amazing.  She has recently flared again when we tried to reintroduce vitamin supplements (note to those with eczema: it's no joke when docs recommend staying away from artificial flavourings and colourings--these have ALWAYS set Bea off!), but this too has subsided without incident or intervention.  It just boggles my mind how healthy and stable her skin is, compared to how it was just over a year ago.  I can't believe that we are now using half of the maintenance dose the NHS wanted us to use, and that was with a highly potent neat steroid, where now we are using a mid potent steroid diluted 13 times in a moisturiser base.  Incredible.

Long awaited update: One year anniversary

It has been far too long since my last update--the months since September have been unbelievably busy.  But with the one year anniversary of the start of our therapy with Dr Aron right around the corner (26 of February, according to my calculations), it's time to bring this blog up to speed.  

Iris (now 5.5 years) has had a completely uneventful autumn and winter.  Her skin is fantastic, and she is no longer using the medicated cream mixture.  She gets the occasional tiny spot (5p/dime sized or smaller) on an elbow or knee crease, but these tend to clear with diprobase on its own.  She used so little medicated cream between July and January that I have most of the pot left, and I am not remotely averse to using it again if we need it, but the fact is, we don't!  

Bea (2.5 years) has had something of a tumultuous time between October and December, with illness after illness after illness, all mostly colds and coughs.  Her skin flared with each one, and I did not manage the flares properly at first (I was out of practice as her skin had been so stable for so long!).  However, I consulted Dr. Aron and we got back on the right track.  By Christmas, we were down to one app every other day again and by January we were back to twice a week.  Excitingly, the antibiotic cream has been removed from her compound, but her skin remains gorgeous!  She has recently had another bug, quite a severe one in fact, enough to be admitted to the children's ward of our local hospital, but her skin was mostly fantastic--only her face flared a bit, but not severely.

So, we are still thrilled to the bone with this therapy and still would recommend it to ANYONE suffering from eczema.  A year after all the fear of TSW and the horror of failing conventional treatments, we are exactly where we hoped we'd be: eczema in remission (in the case of my eldest) or well managed with minimal treatment (in the case of my youngest), and all achieved without suffering and under the guidance of one of the most attentive and effective practitioners we have ever known.  

Below are some photos I posted of the girls on the Dr Aron Eczema Treatment Discussion Group on Facebook as a 'nearly one year on' update a few weeks ago (I've tried to protect Iris' modesty in her photos, hence the reason they are of some of her worst areas as opposed to full body!).  Magic, as Iris describes it :)

                                                                                                 

Autumn is upon us!

Time for another update, though as before, I have very little to report as my girls are still doing very well.  Iris has dropped to one application every five days with no change in her skin and Bea is down to one application every other day, also doing splendidly.  The change of weather from scorching to vacillating between warm and cool and wet and dry doesn't seem to have negatively impacted their skin at all.  Both girls have also recently been vaccinated against the chicken pox (a personal choice I made after consulting with Dr. Aron as I don't want CP to set them back skin-wise after all our hard work, as I have heard it has done for other eczema sufferers).  Neither reacted to the vaccine.

School has started, and within a week we were all feeling the germs (yay!), but, again, no skin reaction.  If I've said it once, I've said it ten thousand times: Dr. Aron has transformed my girls' lives. Long may it continue!

End of summer update!

Oh dear, this is long overdue, but we've been so very busy this summer that I haven't managed to sit myself down long enough to get blogging!

The girls are doing BRILLIANTLY.  Iris is down to one application every third day and her skin has not, apparently, taken any notice of yet another reduction in treatment.  I am hoping that Dr. A will give us the go ahead to take her off the cream altogether in the next month or so.  She has, in other news, had a recurring dry skin problem around her mouth and on her lips, but we keep this under control with unmedicated creams and ointments and it isn't overly bothersome.  I don't class this with her eczema as a) she hasn't had proper eczema on her face since well before her first birthday and b) she gets this dry lip thingy whenever the weather fluctuates, and this pattern started two years ago when she began attending nursery.

Bea is also doing very well and has dropped down to one application per day.  For the first few days after reducing the applications, I did worry that the eczema was fighting back as she seemed to be developing a few areas of light, red spottiness.  But after a few days or so, all settled without any additional effort, and her skin has been great since.  While on holiday, she did have a teeny weeny flare on her wrists, but as with all of her flares recently (of which there have been few), this settled within a day with an application of the stronger cream we use for problem areas (i.e. wrists and ankles).

This summer we have been to lots of beaches, climbed trees, rolled in grass, camped, explored allotments, berry picked, more or less lived outdoors, and generally done all manner of eczema-inducing activities, but we have not managed to induce any eczema.  It has been revelatory.  Amazing.

School starts again in less than three weeks, and winter is coming.  Test time: stress and weather changes, and the joys of central heating versus icy temperatures.  And for once, I'm not worried about any of it: hurrah!

In scorching Edinburgh last month

Enjoying the beach at North Berwick, Scotland

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!