Tuesday, 8 July 2014

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.  


Next up:  Spring, setbacks, and success!

1 comment:

  1. Hi, I wondered if you could tell me if at first after the first application, the spots were red? Did it take a few days to tell a difference? Thanks for any help.