Part 9 – Memories – then & now

I’m a great user of facebook (too much, in fact) and one of the features I like is the ‘On this day’ memories showing my posts from years gone by. What I show on my own facebook profile is, however, selective and I don’t share much about the ‘bad stuff’ that goes on in my life. This got me thinking about my many, many posts in closed eczema facebook support groups prior to July 2014 when my now 8 year old daughter started on the Aron Regimen (AR).

Below, I share a small selection of these posts and compare my situation in the first half of 2014 to how things are now. Apologies for the self-indulgent nature of this blog post, but today has found me in a nostalgic mood.

1. The itchy dozen

 

In January 2014, Anna’s increasing and incessant itch led me to buy “The Eczema Diet” book and a quest for feeding her only ‘eczema safe’ foods and avoiding ‘the itchy dozen’. Anna cheerfully went along with whatever I served up (the girl will eat anything – although she did later admit to not being too fond of antihistamine-rich papaya). Unfortunately my dedication was short-lived. I still have a cupboard full of strange ingredients (rice bran oil, Celtic sea salt, carob powder, citric acid anyone?) to tell the tale of my half-hearted efforts. 

Today: We still avoid Anna’s known allergens (dairy, egg, nuts, sesame) as she’d vomit otherwise. I try not to give her too much sugar or junk food as I believe these can aggravate her eczema. Certain foods that used to cause her to flare she is now able to tolerate okay in small quantities eg. tomato-based sauces.

2. The guilt

  

Bad mum alert – daughter chooses to give herself a punishment for scratching because she was itchy (and used to being shouted at for it). Poor love!

Today: Anna still gets itchy sometimes but nothing like before. And the daily antihistamines and pleas/cries of “stop scratching” are a thing of the past.

3. Restless sleep

  

I’ve never shared much ‘bad stuff’ on my personal facebook profile (the posts in this blog are all from a closed eczema support group) but, for some reason, I did share this video in March 2014. It popped up in my facebook ‘memories’ a couple of days ago and gave me the idea for this post. 

Today: Fortunately, Anna now sleeps peacefully like a baby.

4. White gloves

  

We moved from Anna wearing scratchsleeves every night to sometimes wearing white cotton or silk gloves during the day, including trips outside the house. Luckily, she has never been a particularly self-conscious child.  

Today: No more gloves, yay! Although Anna’s hands are still her problem area and the most prone to flares, she no longer scratches at them and so can go glove-free.

5. Spring assembly

  

What jumps out at me from this post is that Anna was still itchy all over despite most of her skin looking fine (thanks to the steroids).

Today: I still have to pinch myself that today Anna uses diluted steroids once a week and is near itch-free whereas 3 years ago she used NEAT steroids once a week and was frequently itchy. It’s all down to the antibiotics (and the way Dr Aron uses them). We haven’t used antibiotics in Anna’s AR compound for nearly 2 years but, after getting we on top of the staph infection in that first year on the AR, the itch has thankfully more or less stayed away.

6. Hospital dermatology appointment

  

This was our first dermatology appointment since Anna was a baby. The dermatologist told me it was like teaching me how to suck eggs and to keep on using the steroids as instructed. I wasn’t reassured, as things were getting progressively worse. 

Today: We cancelled our follow-up dermatology appointment a few months later as Anna’s eczema was by then brilliantly controlled on the AR. With the exception of one GP appointment (localised infection) she hasn’t had to see a GP or dermatologist about her eczema since she started on the AR almost 3 years ago.

7. The Vicks Experience

  

 Warning: do not try this at home! There are all sorts of weird and wonderful (or not so wonderful) things that people will try in the hope that it helps their eczema. For example, emu oil, ‘Egyptian Magic’, colloidal silver; things that your ‘man in the street’ will not even have heard of. The strangest thing we ever tried on Anna was a household name but an unusual choice of eczema treatment nonetheless (I read about it somewhere!) – Vicks Vaporub. Fortunately just a little experiment behind the knees. It did not help! But a tickly experience apparently.

Today: Phew, our search is over. Now all that Anna needs is her AR compound, Bepanthen ointment (yes, the stuff for baby’s bottoms) and occasionally calamine lotion.

8. Still scratching

 

I hate what happens in the video I shared in this post (to see the actual video, go to part 2 of my blog – https://annaanddraron.wordpress.com/2014/07/14/part-2-the-itch/) and the fact that the itchiness sometimes drove Anna to tears.

Today: There have been no more eczema tears since Anna started on the AR.

9. Wet wraps 

 

This post was about Anna’s red, hot cheeks. But when I read it again now what I spot is her (soggy) bandaged arms. It was not uncommon for us to ‘wet wrap’ her in those days and so I thought nothing of it at the time.  

Today: Wet wraps are another thing of our past. We don’t need them on the AR.

10. ‘Natural’ is not always a good thing

  

“Try bathing in dead sea salts”, they said, “they really help soothe the skin”. Except Anna seemed to have an allergic reaction to her first and only Dead Sea salt bath. 

Today: Anna’s skin doesn’t need soothed and she has fun-filled baths in … just warm water. When she gets to the smelly stage we shall use Dove Sensitive soap-substitute bar (which her skin is fine with). 

Some of you reading this might be thinking that Anna’s eczema didn’t seem that bad, and I agree that it wasn’t nearly as severe as many of the cases I read about on facebook. However, worrying about it really did seem to be taking over my life that first half of 2014 and it was increasingly impacting on Anna’s quality of life. The difference that the AR has made to us as a family is immeasurable.

Facebook has found a great way of reminding me of this today as it’s easy to forget that dark place we have come from. So thank you once again to Dr Aron, who today celebrates 50 years (and counting) in his career in dermatology.

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Part 8 – The 2nd year – my top 5

Today marks 2 years since I made the decision to start my now 7 year old daughter Anna on the Aron Regimen and so I thought it was time to update my blog. If you’re new to this blog and you want to start at the beginning then here is a link: http://www.annaanddraron.wordpress.com/2014/07/12/part-1/.

Nothing has really changed in terms of Anna’s skin care – we still apply her compound cream all over her body once a week (or more frequently to her knuckles) and she continues to be pretty much eczema symptom free. The only difference from last year is that the compound no longer contains antibiotic cream. This means that it contains only steroid heavily diluted in moisturiser. Lots of moisturiser. I reckon that one tube of topical steroid is lasting Anna 6 months. I am very happy to be using so little and her skin has never looked better.

Although Anna’s eczema is no longer keeping me busy (one application a week – easy, peasy!), it’s been a busy year for growth of the Aron Regimen. For reasons of history/nostalgia if nothing else, I’ve set out below my top 5 highlights of the last year. Some of these stem from the fact that I’m part of a group of volunteers who are campaigning to raise awareness of the Aron Regimen around the world.

In no particular order, my top 5 are:

1. Tyler video goes viral

In April 2016, a mum Debbie in Australia made a video about her son Tyler’s eczema journey and his transformation under the Aron Regimen. This was picked up by the media, the video has had over 100,000 views and Tyler and family even appeared on the news. Check out the impact Tyler’s story had on the number of members in the Dr Aron Eczema Treatment Discussion Group:

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The social media has been so important in people finding out about the Aron Regimen. In order to reach as many people as possible, in the last year the campaign group has set up a Facebook page (in addition to the Facebook group) and Instagram and Pinterest accounts.

2. Dr Aron goes to Chicago
In September 2015, Dr Aron (who lives in South Africa) visited Chicago as a guest of Dr Peter Lio of the Chicago Integrative Eczema Center. Dr Lio was keen to learn more about Dr Aron’s method and, while he was there, Dr Aron gave a presentation (see video) to a local eczema support group. Patients from all over the US travelled to Chicago to meet the doctor who had helped their children.

Dr Lio now practices the Aron Regimen on many of his own patients. Here is an article he has written about it: http://www.chicagoeczema.com/resource/innovations-in-eczema-care-the-aron-regime/. Dr Lio also acts an adviser to the National Eczema Association and they featured the Aron Regimen in their February newsletter, a far cry from the National Eczema Society in the UK who have known about the Aron Regimen since 2008 and yet seem to actively disapprove because it goes against the norm.

3. The Weavers are found
Near the start of his Chicago presentation, Dr Aron talks about a then 13 year old girl in the UK, Laura Weaver, who was one of his first patients when he started his online consultation service in 2008. Dr Aron lived in London at the time and he had seen Laura on a popular breakfast television programme This Morning because her eczema was so severe. He managed to get in touch with Laura’s mum Lisa, Laura commenced treatment on the Aron Regimen and she returned to This Morning with clear skin. Dr Aron was suddenly in demand.

I was delighted when Laura and Lisa Weaver both joined the Facebook group earlier this year, after one of my friends found them in an extensive facebook search, and more so to learn that Laura is still doing well on the Aron Regimen.

4. My friend Victoria gets creative
Victoria’s daughter Martha is also on the Aron Regimen (check out her brilliant blog) and she and her husband have made a couple of videos which I simply love. The first because me and Anna feature in it played by Play Mobil characters, which Anna finds hilarious:

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The ‘real’ me and Anna are taken from my YouTube video of 2014 where I spoke about the Aron Regimen and which Victoria watched and identified with.

The second video is one Victoria made to celebrate the Facebook group reaching 10,000 members. I love the video because it’s so upbeat and full of hope and shows what can be achieved in not much over 2 years since the Facebook group was formed.

5. Meeting Dr Aron
In February 2016, I had the pleasure of meeting Dr Aron, along with many of the UK campaign group members, when he was in London for a few weeks. What a humble and funny man! An afternoon I’ll always cherish and remember.

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I’ll close, probably for another year, with a song Anna made to say thank you to Dr Aron when she discovered that the reason I’d travelled to London was to meet him in person for the first time.

And thank you to Anna for being the reason for this story.

Part 7 – One year later

It has been 7 months since my last blog post and so I thought I would provide an update. In 3 days’ time it will be exactly one year since my daughter Anna starting under Dr Aron’s regime for treating atopic eczema. If you are new to this blog and you want to start at the beginning then here is a link: https://annaanddraron.wordpress.com/2014/07/12/part-1/

There are two things I’d like to cover:

1. Anna’s eczema

Anna is now using Dr Aron’s cream for maintenance all over her body once every 7 days (and more often on small patches of eczema that appear from time to time on her lower arms and hands). We don’t even moisturise her in between. Parents of eczema sufferers, whether under Dr Aron’s regime or not, will appreciate that it is a dream to be applying creams so infrequently. I hate applying creams. There are all sorts of semi-unpleasant things I would rather do (eg. housework!). But at once a week I really can’t complain.

Anna’s cream is unchanged since she started a year ago and still contains the same mix of steroid, antibiotic and moisturiser creams, with the amount of moisturiser being 13 times the amount of steroid (unlucky for some but lucky for us!). With her next pot of cream, which we’ll start in a few weeks, we’re going to remove the antibiotic element and see how that goes.

Dr Aron is always the first to stress that his regime is not a cure but a way of managing eczema. Anna still has eczema, albeit it (thankfully) does not show itself very often or very badly. We work hard at keeping her skin eczema free – trying not to let her get too hot or sweaty, giving her a healthy diet (and avoiding too much sugar, preservatives and E-numbers), obviously avoiding all of the foods that she is allergic to, stopping her rolling around on grass or on carpets, keeping her away from animals, being constantly vigilant of the condition of her skin. It is worth the hard work; complacency and eczema do not go well together.

Before Anna started under Dr Aron’s care, she was itchy what seemed like ALL the time. A week into Dr Aron’s care, the itch had completely disappeared. This was when we were applying the cream four times a day. A year down the line and with hardly any cream being applied, Anna does get itchy sometimes and maybe one or two nights a week we’ll put her in scratch sleeves overnight (‘just in case’). But it’s a fraction of what she experienced before. Eg. we never feel the need to give her an antihistamine whereas she used to take one daily.

It’s easy to get used to this new way of life and forget how hard things used to be. The other day I came across this video I took of Anna the week before she started with Dr Aron:

Unhappy memories, but it shows how far Anna has come. The video was taken when we were on holiday in York last summer. It was during that holiday that we signed up with Dr Aron. I couldn’t wait to get home to get started. This year, we are back in York (right now) and it seems almost fitting that Anna is having her Dr Aron “anniversary” here.

To close this section, here are a couple of photos – one of Anna in a costume that I wouldn’t have dreamt of putting her in before Dr Aron and the other of the thank you card Anna made for Dr Anna last year (the card look literally months to get from the UK to South Africa but it made it in the end).

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2. Growth in the Aron regime

When Anna started with Dr Aron a year ago, I knew of about 10 existing patients and there were about 100 people in the ‘Dr Aron Eczema Treatment Discussion Group’ on Facebook https://www.facebook.com/groups/draron/. Today, there are over 4000 members of the Facebook group and I could name literally hundreds of patients. The growth has been phenomenal and it shows the power of the social media (Facebook at its best) and ‘word of mouth’.

Here is the Facebook cover page, with photos of some of Dr Aron’s patients:

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Here is a map showing the locations of just some of Dr Aron’s patients in the UK:

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And that is just the UK! Dr Aron has hundreds of new patients all around the world and, in particular, in the US, Canada, South Africa, Australia and New Zealand.

Dr Aron is so busy that he has had to close to new patients for a couple of months, until 21 July 2015. If you’re interested in signing up then you can register now and ‘join the queue’. See his website http://www.draron.com.

I’m part of a campaign group that is working to encourage research into the Aron regime and for Dr Aron’s method to be adopted more widely. Things are happening, albeit it will be a slow journey. The latest exciting development is that a top dermatologist in the US, Dr Peter Lio, has taken an interest in the Aron regime and has invited Dr Aron to Chicago in September: https://m.facebook.com/story.php?story_fbid=763079423800978&id=269151596527099

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Dr Lio is a member of the the National Eczema Association (NEA) Scientific Advisory Committee in the US. I am hopeful that the NEA will be open-minded about the Aron regime. Things are more challenging in the UK, where we have the NICE guidelines (SIGN in Scotland where I live), which dermatologists do not like to deviate from. I wrote to the National Eczema Society (NES) in the UK (three times!) and they finally replied and told me that “topical steroids and antibiotics should be used in short bursts for flares and infections”. Dr Aron’s method, which uses steroids and antibiotics continuously for a period of months but gradually tapering off, produces far superior results and yet the NES will not consider what goes against the standard practice in the UK. What I want is for research to be done into the effectiveness and safety of the Aron regime so that the NICE/SIGN guidelines can be updated.

As a closing note, this has all had a huge (and positive) impact on my life in the last year plus kept me very busy and helped me learn new skills. But one of the nicest things to have come out of it is the friends I have made along the way 😊

Part 6 – The 6th month

It’s been 3 months since my last post and things continue to go well. Anna is now into her 6th month of treatment under Dr Aron. Having started in July with 4 applications of the cream per day, we are now down to 1 application every 4 days to her torso & back and 1 application every 2 days out of 3 to her arms & legs.

Apart from dry knuckles and the occasional itch, you would no longer know that Anna, now aged 6, has eczema. She has probably forgotten about how much our lives used to revolve around applying creams and despairing at them not working and shouts of “stop scratching!”. I, on the other hand, have not forgotten and continue to pinch myself at how our lives have changed.

Here are some ‘before’ and ‘after’ photos of Anna’s skin:

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And, as Anna’s photos don’t have much of a ‘wow!’ factor to them (her eczema, although by no means ‘mild’, was not at ‘severe’ end of the spectrum), here are some photos of a couple of my friends with kids unlucky enough to have eczema about as bad as it gets. But lucky enough to find Dr Aron!

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The first photos are of the 4 year old son of a mum I mentioned in Part 5 who first heard of about Dr Aron from comments me and some others had made about him in a Daily Mail eczema article in September. Within one week of reading that article, she had started with Dr Aron and her son’s skin was almost eczema-free. If she had not read the article, her dermatologist was talking about putting her son on immunosuppressants (serious stuff).

The second photos are of the 13 year old daughter of the mum mentioned towards the end of the Telegraph article. She had seen top dermatologists in the UK and had tried probably every eczema treatment going but with little success. Her daughter was so sick that she couldn’t go to school and she had no quality of life. In January 2014, she sent out a plea for help via facebook eczema support groups and this led her to Dr Aron (who only a handful of people on facebook were using at the time – compared to the hundreds that there are now). The transformation in her daughter is nothing short of a miracle.

Here are a few of the things that have happened since my last post in September.

1. The Telegraph article
On 6 October 2014, the Telegraph (a quality newspaper in the UK) published the following article about Dr Aron’s treatment regime. It featured a mum Milli whose baby son Albie is being treated by Dr Aron. It was Milli who founded the ‘Dr Aron Eczema Treatment Discussion Group’ (https://www.facebook.com/groups/draron/) back in March 2014.

http://www.telegraph.co.uk/news/health/children/11142266/Eczema-expert-defended-by-parents.html

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Since the Telegraph article came out, Dr Aron has been very, very busy. So much so that he is currently on a break from taking on new patients so that he can continue to advise his existing patients. It makes me happy reading about so many success stories on the facebook group (where the membership has quadrupled since the start of October).

2. The YouTube video
I’m not sure what came over me but, about a week later, I posted a clip on YouTube of me and Anna in which I talk about my experience with Dr Aron. I’m embarrassed about being on film and can’t believe how Scottish I sound but here it is:

3. The cream
Our first 5 pots of cream came from Landys pharmacy in London who mixed together the steroid, antibiotic and moisturiser and posted them out to me. At around £50 per 450g-ish pot, this was rather expensive. So rather than go for pot number 6, I got the steroid and moisturiser from my GP (where I had them on repeat prescription anyway) and bought just the antibiotic from Landys. This reduced the cost per big pot to well under £10. I do not have a practical bone in my body and so my helpful sister, who just happens to be a hospital pharmacist, mixes them for me. Here is her having a bit too much fun doing her first mix:

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If I was braver and did not have such a fear of rejection/confrontation, I would explain to my GP about Dr Aron and ask for the antibiotic cream on prescription too. I know many “Dr Aron mums” who have done so successfully but I also know some whose GPs have not been prepared to help. Part of the problem is that Dr Aron’s methods are not consistent with medical guidelines in the UK. This brings me onto my next point…

4. The campaign
I am part of a campaign to raise awareness of Dr Aron’s treatment method amongst health professionals in the UK and to attempt to change the atopic eczema medical guidelines (under NICE in England & Wales and SIGN in Scotland). Before NICE/SIGN will even consider Dr Aron’s method, medical research needs to take place with clinical trials and all these entail.

We are in no doubt that Dr Aron’s treatment method is incredibly effective and we have not heard of anyone suffer any side effects. Now we just need some clinical evidence, to add to the vast anecdotal evidence.

CAN YOU HELP? If anyone reading this knows somebody in the medical research field who might be able to help then can you please let me know. Or if you know a GP or dermatologist who might be interested in Dr Aron’s methods and willing to try them out themselves (guidelines are just guidelines after all – the Chairman of NICE himself said this to one of our campaign members at a meeting she was at). Or – rich people request – if you know of somebody prepared to help fund such research. Or if you know of a fund or organisation that might be able to. In fact, please email me about anything that you think might help… My email address is in the ‘About me’ section.

I will close by wishing you a happy Christmas and sharing a photo of Anna at her school nativity play earlier this week. She is the middle chicken (the one whose face has not been obscured). Last year, she could not have got through such a performance without being an uncomfortable, itchy mess (sizzling away in her fluffy chicken outfit under the spotlights) and I’m sure she would have been frantically scratching away on stage. The only the thing that might have reduced the attention she drew to herself is that the play was called the Wriggly Nativity and everyone was wriggling to the music. This year, thankfully, her skin was calm and she seemed at peace on stage. It’s wonderful not having eczema spoil things for Anna any more. Christmas presents don’t come much better than that!

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Part 5 – The story continues

It has now been nearly 2 months since we started using Dr Aron’s eczema treatment for our daughter Anna and I’m happy to report that all is going well. We started off on four applications a day (my lazy interpretation of “4-5 times”) and have gradually stepped down, under Dr Aron’s instruction, to two days out of three on her torso and back and twice a day to her arms and legs. The reason that she needs more frequent applications on her arms and legs is that they started to get itchy again when I first reduced the number of applications to twice daily a month or so ago. So we had to step back up and take a more ‘slowly slowly’ approach to weaning her off the cream.

My hope is that within the next 2-3 months Anna can come off regular use of Dr Aron’s cream altogether and use it for flares only.

Anna’s skin is currently completely clear of eczema and she is virtually itch-free. Here is a photo of Anna and her little brother at the beach last weekend:

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She got soaking wet and covered in sand and yet her skin was unscathed. Before Dr Aron, I would have been nervous about letting her dip a toe in the water let alone go waist deep. And the fun she had! Life is suddenly more carefree.

This compares to the dark place we were in immediately before starting with Dr Aron when we were applying a potent steroid neat to her skin over practically her entire body once a week or more AND moisturising like crazy AND giving her antihistamines. And then, the worst bit was, the NHS way didn’t even work! Her skin would improve (a bit) but for no more than a few days and the itch never went away.

Unfortunately, GPs in the UK cannot simply adopt Dr Aron’s method and prescribed mixed creams for daily use like his, even if they wanted to, because it goes against NICE guidelines (and no doubt the Scottish equivalent). Getting that changed will be another story!

As well as my delight at Anna’s new skin, I am also enjoying writing this blog and doing my best to ‘spread the word’ about Dr Aron. The membership of the ‘Dr Aron Eczema Treatment Discussion Group’ Facebook group (https://www.facebook.com/#!/groups/492451777525485/) is going up fast and I’m sure that Dr Aron must be a busy man.

Here is an example of how ‘word of mouth’, or rather Facebook, can help raise awareness of Dr Aron – at the weekend a friend of mine Marisa, who had seen my blog, sent me a Facebook message to say that there was an article in the Daily Mail about a child with severe eczema and what a shame that his mum didn’t know about Dr Aron. So I, along with some other mums, commented on the article on the Daily Mail online. We now have a new member, Jennifer, who joined the Dr Aron Facebook group solely because she had seen one of our comments. Our Daily Mail comments were posted on Sunday, today is Wednesday and she starts using Dr Aron’s cream tomorrow. How great is that! I predict that this time next week her son will be itch-free. What I am not so happy about is that several people chose to ‘dislike’ my comments in the Daily Mail (why would you do that?) but I am trying not to take it too personally.

There are now five Dr Aron blogs that I know about and links to the other four are included in the ‘Other Dr Aron blogs’ page on this blog (you might have to click on Menu). The most recent one was by Emma and picked up by her local press who ran the following story on her yesterday:

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As you probably can’t read the text, here is a link to the online version:

http://www.stokesentinel.co.uk/Health-Sneyd-Green-parents-Emma-Damien/story-22861396-detail/story.html

Calling it a ‘miracle cure’ is a bit of an exaggeration (our children’s eczema is not ‘cured’ but in remission with virtually no symptoms) but it is the next best thing.

Emma’s blog and press article has also led to an influx of new members to the Facebook group and more children being helped by Dr Aron.

Anyway, that’s all for now, folks. Thank you for reading and, remember, if you know somebody with moderate or severe eczema then tell them to google ‘Dr Aron eczema’ to find his website http://www.draron.com.

Part 4 – A picture says a thousand words

We are now on day 11 of Dr Aron’s treatment. Things could really not be better.  Anna previously had dry, red, angry blotches over most of her body a lot of the time.  Now her skin is almost totally clear. Here is a photo of her hands ‘before’ and ‘after’:

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Here are the ‘before’ photos I sent to Dr Aron showing her skin before she started on his treatment:

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The  ‘before’ photo of Anna’s hands was taken in a public toilet. Anna zoned in for her knees to scratch. This was no surprise. What is a surprise is that she has now stopped scratching almost altogether. I had high expectations of Dr Aron but for the itch to go so quickly I was not expecting. The ‘after’ photo shows that her hands are still a bit dry. But the improvement is immense. When she returns to school after the summer holidays I think that the teachers are going to be gobsmacked. As a good friend said to me last week, “I actually can’t imagine Anna without her itch”. A bitter sweet comment. It’s almost as though Anna has a new identity now that her eczema no longer defines her.

As the saying goes, “the camera never lies”.  With eczema, however, the camera invariably lies. It never shows just how bad eczema is. I could get home from work and see Anna’s legs in such a state that I could burst into tears. But take a photo and suddenly they didn’t look too bad. The converse is also true. Anna’s skin is not only clear of eczema right now but so lovely and soft that I have to stop myself from fondling her skin at every opportunity. But you can’t capture that in a photo!

What follows is some ‘before’ and ‘after’ pictures of the kids of some of my new Facebook friends (all with their permission) who have also been using Dr Aron. Many of the ‘after’ photos are just a few days after treatment started i.e. their skin continued to improve. I hope you agree that the results are remarkable.

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I’m not planning on posting again for a while but thank you for following Anna’s story so far. I would thoroughly recommend that any parents of children with moderate to severe eczema at least consider trying Dr Aron. For a long time I watched on the sidelines in the Dr Aron Facebook group (https://www.facebook.com/#!/groups/492451777525485/) and I thought that Anna’s eczema wasn’t severe enough to merit Dr Aron. I finally saw sense and realised that why should we miss out because Anna’s eczema was only bad rather than really bad? Best wishes to everybody out there battling eczema. In some ways it is so “in your face” and in other ways it is a hidden disease and people rarely realise how debilitating it can be. Sheila x

Part 3 – Dr Aron’s methods

In this section I will talk about the methods that Dr Aron uses to achieve his results. These are no secret – they are explained clearly on his website (www.draron.com) and most of the information below has come directly from the website. There is also no magic in the underlying ingredients, which are creams all regularly prescribed by the NHS. The difference with Dr Aron is in the mix!

The cream
The creams prescribed by Dr Aron will vary from child to child and, for a given child, possibly over time. But I believe that most include three key ingredients:
– moisturiser
– steroid
– antibiotic

with the moisturiser being by far the main ingredient i.e. the steroid and the antibiotic are very diluted.

With conventional eczema treatment, the three creams are applied separately, and often with periods of no antibiotic. With Dr Aron, they are applied mixed, with less steroid/antibiotic at each application (since they are diluted) but more applications. We are currently applying the creams four times a day. My hope is to reduce that to once a day at some point over the next year. My dream is to stop the mixed cream altogether and use only the moisturiser going forward, except for the occasional eczema flare. I know mums who have managed this with Dr Aron. Steroid creams are funny things. They can have amazing results but as soon as you stop them the eczema symptoms bounce straight back. With Dr Aron’s regime, I’m hoping I can wean Anna off them over time.

Here are photos of our latest pot:

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You might spot that the three ingredients are Diprosone (steroid), Fucidin (antibiotic) and Diprobase (moisturiser). I’ve intentionally blanked out the quantities as I wouldn’t want anyone to try this themselves at home. This is the current cream for Anna. Different children will receive different creams – both the underlying three creams and the concentrations will vary by child and over time. We have consulted with Dr Aron via email – I send him photos and descriptions and he tells me what to do. I believe that others also use Skype too.

Our cream comes from Landy’s pharmacy in London, which Dr Aron has an arrangement with for his patients in the UK. We pay them privately for the cream, of which I suspect most of the charge is for the mixing. I know of other mums in the UK who get the creams on the NHS and mix them themselves. In other parts of the world, mums often have no choice but to mix the creams themselves. Based on my culinary skills (I’m thinking of white sauces in particular), I hope I never have to mix the creams myself!

The cream is very pleasant and quick to apply, with limited damage to the surrounding person/clothes/carpet/upholstery. For those of you familiar with Hydromol ointment, you will understand what mean when I describe the aftermath as “snail trails”. And the other cream we previously used, “50:50”, gets everywhere. The only person/thing these creams would sink into was Anna. So many clothes with irremovable stains. And it would take lots of hot soapy water to get off my hands. Anna’s skin, on the other hand, would lap it up. I always thought that the thicker/gloopier the cream/ointment the better. Dr Aron, however, thinks differently and I’m rapidly coming round to his way of thinking.

I’m intentionally not going to say much about cost because it will depend on where you live and how you get your creams. I would guess that we are going to pay around £200 for our first month (today is day 11), with this amount reducing gradually over time as we need less help from Dr Aron and less cream. It has been worth every penny and many more!

Lifestyle changes
Dr Aron’s advice from his website follows. Many people new to Dr Aron will have been doing much of this stuff anyway.
– No swimming (until the skin has been clear for 3 months)
– Cotton clothes only
– No or minimal preservatives/E-numbers in food
– No bath additives. Use only Dove Extra Sensitive Cream Bar

“What!?”, I hear you cry? “Surely you’re not suggesting I use soap?”. This was exactly my reaction but, you know, it seems to be working just fine. And it’s not really soap at all but a fragrance-free, soap substitute. Anna was delighted to use “soap” for the first time in her life and her skin has never looked better. I figured that if I was going to go down the Dr Aron route then I had to go down it 100%. In my next post, I’ll show some of the results.

Part 2 – the itch

We are now on day 7 of treatment with Dr Aron and things are continuing to go brilliantly. However, before I get onto the Dr Aron part of Anna’s story, let me tell you about the worst thing about eczema.

To the outsider, the worst thing probably seems to be the red, angry looking skin. To the insider – either the person with eczema or their family – the worst part is (from my view, at least) the intense ITCH. And the solution to the itch is to SCRATCH!

Anna has been itching and scratching almost her entire life. It is horrible to witness and of course even more horrible to experience. I think that the will power needed to hold yourself back from scratching an itch is more than most adults could manage let alone a 5 year old. Despite my best intentions, I find myself shouting “don’t scratch!!” more than I care to admit and even Anna’s 3 year old brother joins in and tells her it will only make things worse. Poor girl!

At its mildest, the itch interferes with normal childhood activities. Take toilet training, for example. Not many mums have to hold their two year old’s hands as they sit on the potty. There is something about bare skin and eczema – as soon as it is exposed Anna goes for it in a frenzy. After a bath I give her my iPhone to hold as I dry and moisturise her so that she is distracted and has no free hands to scratch.

In this video, Anna at least managed to play through her itching:

At its worst (often when she gets too hot) we have to physically restrain her through floods of tears about how it is SO itchy and why won’t we let her scratch? It seems cruel but the alternative is even more inflamed skin or, worse, a blood bath. Fingernails, no matter how short, can do a lot of damage. Even through gloves or similar she can do damage if she scratches hard enough.

Anna has now finished her first year of primary school and one of my most poignant memories, and not in a good way, was the school harvest assembly. Anna’s class had to line up on stage and sing the song about the worm at the bottom of the garden whose name was Wiggly Woo. The lyrics included the line “And all that he can do is wiggle all day and wiggle all night…”. Unfortunately Anna was first up on stage and that’s exactly what she did – full blown wriggling from side to side (think of the way Peppa Pig dances, if that means anything to you) with a good old scratch thrown in. Stress and excitement can make her itchier, which I think was a factor that day. I felt so bad for her and goodness knows what the 200+ parents in the audience thought about the strange child writhing about on stage. Or maybe they really did think she was getting into character of Wiggly Woo!

I describe above the itching in the present tense but this is not correct. To my amazement, the itch seems to have all but completely gone and it did so after the first few days on Dr Aron’s cream. Over 5 years of relentless itching on the NHS treatment and, in less than 5 days on Dr Aron’s cream it has vanished, almost overnight. Wow! I had high expectations of Dr Aron’s cream but I have been blown away by something even better.

These photos show Anna in her “scratch sleeves”, which she has been wearing overnight ever since she was a baby and occasionally during the day at her request (although never out in public “in case people laugh at me”).

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We must have spent hundreds of pounds on scratch sleeves over the years but they have been worth every penny and to those of you with itchy children I highly recommend them (www.scratchsleeves.co.uk). Check out how threadbare the pair in the sleeping photo are. That’s a lot of scratching!

Anyway, the point of telling you all this is that things are going so well that we have stopped using scratch sleeves overnight. As sudden as that! I think that Anna almost feels a bit lost without them but she is embracing her new freedom and I am thanking my lucky stars that I live in the world of Facebook and the helpful mums on there who led me to Dr Aron.

In my next blog, I will talk more about Dr Aron’s methods and the creams that he uses to achieve these amazing results…

Part 1- what led us to Dr Aron

This is the story of our daughter Anna and her eczema and the journey we have started with Dr Aron.

Anna was born in Scotland in November 2008.  She made quite a dramatic entrance to the world as she was born in a hospital toilet with not a midwife in sight and she snapped the umbilical cord on her way out as she hit the floor and I had to pull the emergency cord in the toilet to get help.  But that’s a different story! This story is about her journey with eczema.

Our problems started when Anna was 3 months old and she developed eczema. This wasn’t the mild eczema that some of my friend’s children’s had where they would fret because they had one 1p–sized piece of eczema that wouldn’t shift. Rather it was I’m-too-scared-to-leave-the-house–for-the-comments-I’ll-get and why-is-my-baby-always-oozing eczema. Needless to say, we didn’t take many photos in those days but here a couple (taken to capture how bad it was):

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I had been exclusively breastfeeding but, at 4 months old, we gave Anna her first taste of formulae milk.  Just 1oz but here was the almost instant reaction (plus lots of vomit, which we didn’t take pictures of):

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Needless to say, we didn’t give her dairy again. And hospital tests showed that, as well as dairy, she was allergic to egg, sesame and most nuts. She had been being exposed to these foods through my breast milk. Once we moved her onto hypoallergenic milk her eczema got a lot better (or, should I say, less horrific) and we were no longer on antibiotics what seemed like every second week.

Nevertheless, Anna’s eczema remained an issue and we received care from the hospital dermatology team until she was about 18 months old when we seemed to get forgotten about. This wasn’t such a big deal though, as her eczema was much less of an issue by then. We were still moisturising frequently but rarely needing steroid creams.

In July 2011, Anna’s 9 month old baby brother Charlie was diagnosed with type 1 diabetes, in a rather traumatic experience with an ambulance dash to hospital and the threat of a coma or worse, and our world was turned upside down.   Anna, then aged almost 3, showed her competitive streak and regularly reminded me that “I’ve got three things wrong with me – eczema, food allergies and asthma” as opposed to Charlie’s one thing (but, trust me, type 1 diabetes is a huge thing to deal with). Oh yes, I forgot to mention Anna’s asthma, which was diagnosed at age 2 and involved a few overnight hospital stays.

A few months into Charlie’s diagnosis, I turned to type 1 diabetes support groups on facebook. I use them less now but, at the time, they were my lifeline. I learned so much and also received the emotional support I needed and I’m still an active member of many groups.

A year or so later, when Anna was about age 4, her eczema took at turn for the worse and it has been getting gradually worse ever since. We got referred back to hospital dermatology but they told me it was like “teaching me to suck eggs” and to keep on using the steroids (and, in fact, even more steroids) and to moisturise lots. This wasn’t particularly helpful but was no more than I expected from the NHS.

It finally dawned on me that it might be a good idea to join an eczema support group, which I did.  In type 1 diabetes, there are often debates (bordering on fights) over whether or not to night test (i.e. check your child’s blood glucose level overnight – one of the risks of not doing so being that there is a tiny chance that they might die overnight). In eczema support groups, the equivalent debate is over whether or not to use topical steroid creams such as hydrocortisone or stronger (we are definitely in the stronger category).   We have always been in the pro-steroid camp and I was never tempted to follow the anti-steroid mums. However, I did pay attention to the small number of mums who talked, in almost reverent tones, about a Dr Richard Aron from South Africa with whom they had achieved amazing results for their children.

I joined the facebook group ‘Dr Aron Eczema Treatment Discussion Group’ (https://www.facebook.com/#!/groups/492451777525485/) and avidly followed the successes and joy of other families for a few months (literally everyone on the group has had amazing results).  Then, in June 2014, I decided that we wanted a piece of that success.  We are currently on day 5 and I’m not exaggerating when I say it is like a miracle has taken place.  But I will provide more details in my next post ….