Monday, October 26, 2015

Nine months later with Dr Richard Aron

No doctor identified and treated the staph
As I sit here, 9 months later, I am still amazed and so very grateful at how my life has changed since stumbling upon an Eczema Facebook page run by parents of children with eczema. The desperation of what we went through for five and a half years has almost become a distant memory....... almost. While the memory is distant, all it takes is one of these pictures to take me right back to those days and particularly those endless nights.

People would think that she'd been in an accident
She would scratch herself raw
While I no longer panic when Tomato walks barefoot on grass or rides her bike or does other normal childhood activities that make her hot and itchy, I remember when these simple things used to send her into a scratching, bleeding, crying frenzy and made all our lives unbearable. I remember feeling like Fiona in Shrek, dreading sunset. 5pm became our cut off time. This is when we would leave wherever we were, because at night the itching became even more intense (apparently this is due to histamine levels increasing at night) and this is when Tomato did the most damage to her skin. Once we stayed too long and a good friend, who we saw often, was shocked at her sudden change in demeanour and asked what was wrong with her. The thing that was wrong, was that she had a silly little thing called eczema. We hid the nightly trauma from everyone, even our closest family never really knew how bad it had become. We went home and dealt with the endless screaming and clawing and bleeding on our own, away from prying eyes and good-intentioned people who tried to get us to try yet another treatment, another doctor, another cream. We refer to those times as "dark days" and only eczema sufferers and parents watching their children suffer from this cruel disease, truly understand. 

Tomato put on a lot of weight from all the oral steroids
As you may have read from my previous posts, we were dealing with a little girl who hated her life and was suicidal. She wasn't dramatic about ending her life, she was quiet and thoughtful when she told me her decision and those words still haunt me. All those magazines and baby books and raising children magazines didn't prepare me for that discussion. So when I say we were desperate, I mean we were desperate. I can't think of any other way to describe how I felt while I watched my beautiful, confident little girl regress into the shell of who she had used to be. Being teased and called "Blood Girl" and adults and children alike constantly asking what was wrong with her, took its toll. How was she supposed to deal with all that negative attention when as an adult, I wasn't dealing with it very well. The judgement was everywhere.

She always looked ill
Even when she was joking around, she was sore
Now, instead of obsessing about trying different doctors and creams and lotions and therapies, our whole family is enjoying the calm after the all-consuming eczema storm. I live in South Africa where state medical care is far from adequate and therefore paying for doctors and specialists is the norm. We have private health care insurance called "medical aid" which usually covers less than a third of all doctor visits and medication. Due to Tomato's skin, by February of any given year, we had depleted our "savings" which is the top up. This means that from March to December we would pay out of pocket for all medication and doctor visits. This year for the first time, Tomato's brother and sister got to use some of the medical aid, which has never happened before. We haven't seen a specialist this ENTIRE YEAR! We used to live at the allergist and my kitchen looked like a pharmacy with all the meds that I used to administer daily to a less than willing recipient!

So where are we now on the Aron Regime? We are down to 3-4 applications per week and Tomato recently started SWIMMING!!! She swam, rinsed off immediately and applied cream and we haven't had any issues. The delight on her face when I said "get your cozzie, you're swimming too" was priceless!! 

If you missed my earlier posts on how I found Dr Aron and our journey so far, I have created links at the bottom of this post, together with some additional information about Dr Aron, where you can catch up.

The last 9 months have opened my eyes to a plethora of new things, here are just a few:

People think I'm crazy (ok full disclosure, they may have thought this before!) 
The only doctor who could help us, I found online. What?? I can see people thinking I'm cuckoo, especially when I tell them I've still never met the man who gave us our child back. People usually start asking if he's a REAL doctor and probably think I'm using an "eye of newt and toe of frog, wool of bat and tongue of dog" type of potion to get the results we have had. I've learned that the Internet is not all bad and not everyone is trying to rip me off (this was a huge one for me to wrap my mind around because I am very suspicious by nature). Living in Africa, I am bombarded by con artists on a regular basis, so I am pretty savvy when it comes to weeding out the rif raf. I often need to explain that Dr Aron is a qualified Dermatologist who has practised for over 40 years AND the ingredients in the cream are readily available creams but are not the same for everyone, it is a doctor's prescription based only on my child's skin specifically and it's not brewed in a witch's pot, it is mixed specially for me at a pharmacy.

Cooling with Avene water 
Caring doctors do still exist
I really cannot count the number of doctors and specialists that we have seen over the years for Tomato's skin and only 3 stand out as being willing to go above and beyond. Only 3 doctors saw me and my child broken and desperate and not just as another transaction in their full diary, to see, get their consulting fee and forget about once we'd left. Caring doctors, who treat patients as people and not sausage machines, are very few and far between. Dr Aron is number 1 on my top 3. For the cost of one consultation so far, I have contacted him many times and he has always responded promptly with sage advice, helping me to taper down on the cream or assisting with a flare or cautioning me against being over confident, with me wanting to reduce applications too quickly. I have never had such continuous access to a specialist as I have now with this amazing man. This has reduced the entire family's stress levels, astronomically. We no longer live in fear. If there is a flare up, we will handle it, we don't have to go back to where we were.

Tomato, full of fun and loving that she can swim again!

Support for The Aron Regime
Whilst Dr Aron offers online consultations on his website he does not run the closed Dr Aron Eczema Treatment Discussion Group or the open Dr Aron Eczema Treatment Information Page on Facebook. These were set up by parents and are administrated by parents, whose sole aim is to share this amazing treatment with others and to put an end to the suffering. Patients and parents helping each other. Young patients have also set up and now manage Dr Aron Instagram and Twitter accounts.

People can't believe that we take time out of our busy lives to offer advice and support to others who are going through what we have all been through before. We sometimes get lambasted from new members who think we're all part of the group to make money by coercing unsuspecting people onto this regime, but in reality, there is no money to be made. Dr Aron writes the prescription (with 5 refills) but the patient's doctor needs to re-write it, so there's no money changing hands apart from the initial consultation fee and perhaps another one further down the line when a new prescription is needed. For the amount of time Dr Aron has given me, for the one fee that I have paid so far, that is the best deal I've had from any medical professional EVER, never mind a specialist!! We are still using the first prescription 9 months later and have tossed all the other medications and creams which cost a small fortune.
Dr Aron is her hero
So why do we do it? Why do we spend hours helping others on the group and page? Well, like me, we have all suffered or stood by helplessly watching our children itch, scratch and bleed, day after day, night after night, some of us for years. We know all too well those dark days and nights that cannot be explained to an Eczema "outsider." And that is why we reach out. Nobody deserves to be in that dark place. Our children should all be able to live normal lives without being ostracised and ridiculed because of this horribly visible, debilitating disease. 

Most of us were misled by doctors who were either unaware of The Aron Regime or chose to disregard it and we therefore believed that clear skin was impossible. Every doctor and specialist gave us the same advice. In our case we were told Tomato's life would never be normal. I couldn't and wouldn't accept that, but it almost broke me. We would have to manage the eczema with daily wet wrapping, chronic oral steroids, antihistamines and we were about to start photo therapy just to get some temporary relief. There was no way that Tomato's skin could ever be normal? Her disease was too severe? WRONG!!! All of them were WRONG. Dr Aron proved them all wrong. Tomato's skin is as clear as her siblings' and became that way very quickly on this regime. So it's time to give back, to raise awareness and help others discover this treatment, so children can have their childhoods and adults can start to live the lives they were destined to lead, without the itch.

"Eczema is not only a disease of the skin, 

it's a disease of the soul"

I've been lacking motivation to finish this blog post that I started over a month ago. Revelling in the luxury of an Eczema-free existence, I woke to a message on the Dr Aron page which reignited my desire to finish this post. I was reminded that blogs help others. It's messages like this that make all the time and effort worthwhile. I had recently posted a particularly gruesome Eczema photo of a child's hand, together with photos taken after a few days on the Aron Regime, where the hand was healing nicely (of course!) The mom was thrilled with the treatment. Another mom browsing Facebook found the post and left this comment that hit me hard: 
"OH MY GOD!!! We have tried everything and this is exactly how my son looks. This is crazy!!!! I thought I was all alone and such a bad mom. Please please tell me how?!"
I get it. I know EXACTLY how this mom feels. Why hadn't she found this treatment earlier? Can it be true? Why have all the doctors given us something that doesn't work? She feels like a bad mom but she is far from it. So if anyone wants to know why we do it, this is why we do it. This mom now has options and I have managed to make her life brighter by giving her the hope that I experienced 9 months ago when other parents offered me hope. Hope is the only light out of "that dark place."

One man, with a passion for treating patients with Atopic Eczema has successfully treated over 6 000 patients world-wide through offering online consultations. Without Dr Aron stepping out of his comfort zone to offer this service, many people would still be suffering. His passion has ignited a passion in many others who are creating a groundswell to get the Aron Regime recognised. Even a small effort can reap great rewards. You don't need to spend hours like we do, just share this post. You never know who you may be helping out of their own dark place that you know nothing about.

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