Thursday, December 11, 2014

The Day I Found Dr Richard Aron and Our Healing Journey Began

To follow our journey from the beginning, please click on this link Skin Deep which was my very first post regarding our ongoing struggle with Eczema. When I started blogging, I blogged about my family and our lives, so the posts are usually fun-filled, however Skin Deep deviated from the norm. As harsh as it is, that is exactly how our life was. Reading it now, makes my stomach tighten and my heart beat a little faster from sheer horror. You may think the word "horror" is an exaggeration, but it is nowhere close to what we have been through, and that blog post recounts a lot of the pain.

Secondly, please click on this link The Eczema Chronicles to read, on a monthly basis, what different medications and alternative therapies we tried, for a 16 month period, when Tomato was so bad that she couldn't walk or go to school! This is a real glimpse into the life of an eczema sufferer and how the entire family is affected daily.

Those were very dark, hopeless days, until we found the light at the end of the long 5½ long tunnel, and it wasn't an oncoming train, it was just pure, beautiful light! For more "before" photos go to the bottom of the page and click on the other Dr Aron Links.


*****

I have included the last 2 paragraphs from The Eczema Chronicles, so if you have not chosen to read that post, this one will still make sense! 


On Sunday 30th November Tomato was battling with the itching. She loves having play dates with her little friend at a local coffee shop that has a playground, so she asked if I would set up a play date with her friend, which I did. Because she hadn't bathed in over a week, I told her that she had to bath before we went out to meet her friend. She was very stressed but I eventually coerced her by making it special, saying she could bath in my bath, I would be there the whole time, I put on relaxing music and she tentatively got in. She was in the bath for no more than 2 minutes before the screaming started and she had scratched her skin raw before I was able to get her towel! I dabbed her dry as I had been taught, put some Vaseline on and put her in front of the TV to distract her from scratching. It didn't help. Within minutes she was bleeding, not just the smearing of blood on the couch that by now was the norm, but dripping drops of blood all around her and when it was time to go out to see her friend, she was too sore to get off the couch and she couldn't stop crying. Sometimes I wonder if her behavior is just for attention, but today I realized that she would have had to be very sore to cancel her play date with her best friend. This was the beginning of an "all-fall-down day." I went upstairs and cried and cried and cried.

I consider myself to be a very strong person, but the past few years have taken their toll on all of us and I was drowning. This is the day I decided to reach out and join a support group, which I had never even considered before. I needed to cry and vent my anger of having to watch my child suffer, to other families going through the same horror as we were. I was ready to give up. I felt that I wanted to run away and never come back. The helplessness of our situation was weighing so heavily on me. I couldn't even see through my tears. I got into bed in the middle of the day and left hubby to feed, bath and put the kids to sleep, I was exhausted and I had been told categorically that there was no hope by all the medical professionals. Tomato had twice told me that she didn't want to live anymore and I totally understood how she felt, but hearing those words from your child is heart-breaking. The situation was hopeless and depressing.

Watching TV after bathing on 30 November 2014
When I eventually stopped crying, I started to Google. I found a Facebook group but it was closed and you had to ask permission to join, so I kept researching and I came across a video of a dermatologist, Dr Richard Aron who was interviewed by Carte Blanche. Suddenly I was interested. Carte Blanche is a show that has been on South African TV for probably 15 years or more and has an excellent reputation of weeding out the con artists and exposing controversial issues that other shows are too afraid to report on. 

I instantly was drawn to this man. He made sense! The skin needs a combination cream of cortisone/ steroid as well as an antibiotic to stop the staph infection and of course a moisturiser. We had been using these, but in extremely high doses. Dr Aron explained how it worked and exactly how staph worked. Our whole family had been plagued by staph infections that Tomato had kindly handed around our family for the past 5½ years. Hubby had to have an abscess drained surgically due to one of his infections and when Lettuce was 2 days old he got 2 "pus things" (as Tomato calls them) in his groin and again 5 months later, a huge one on his forehead! We had used all of those medications that Dr Aron mentioned - AND IT STILL WASN'T WORKING!! 

Here is the Carte Blanche video that changed our lives:



Due to the fact that the video was 5 years old, I thought he'd probably retired or worse, died (sorry Dr A!) So I went to Dr Aron's website and was delighted to discover that he was alive and well, and was offering cyber-consultations. Even when I read that, my inner BS radar did NOT go off. I live in South African where we are targeted daily by con artists, so I question everything. My BS radar can detect a con artist from miles away and this is usually what happens when somebody tells me to deposit money into a bank account before I've even met them!! But my gut said "go for it, you've got nothing to lose." My practical brain however, ignored my gut and decided to look for some "dirt" on Dr Aron (apologies again!) Surely there was someone who had an axe to grind with him, I wanted to see the negative comments, so I could get a balanced view, so I continued searching. The only "negative" thing I could come across was this article Eczema Expert Defended by Parents that had been recently published, which showed that parents had seen dramatic results! Parents who sounded like they had been living through the same hell as we had! Parents who were trying a different approach and going against their own doctor's advice.

I then requested to join the Dr Aron Eczema Treatment Discussion Group on Facebook. I was reading through success story after success story and realised that this entire group of parents were (or had been) in the same situation as we had been, to varying degrees. It was such a positive, uplifting group and I couldn't find one comment that was judgemental, only helpful. I decided to read as many comments as I could, but I was getting excited, could this be the answer?  I was umming and ahhing as to whether to proceed, when I came across a comment from one of the administrators saying that Dr Aron was going to take a well deserved break and would not take on any new patients from 1 December until late January 2015. My heart dropped, it was 8pm on Sunday night, 30th of November! Now I am an instant-gratification sort of chick and patience is NOT a virtue of mine, so there was NO WAY that I could wait that long if it was possible that Tomato could get relief, like the other children who were mentioned on the forum! 

I rushed down the stairs and into Hubby's office (he was catching up on some work after a hectic day of being a single parent with the kids) and I said "I'm just telling you that I'm about to spend some money on the Credit Card for a new Dr for Tomato and I have to do it NOW!! I just have a really good feeling about this!" He looked at me like I was mad. He didn't look like he was comprehending and he just said "OK??" very slowly. I rushed out, got my Credit Card and switched on my PC. I had no idea how I would do it, but I was going to follow the instructions and call Hubby if I needed help making the payment. But it was so easy! I put in my details and viola I got a message asking me to send an email with some photos to Dr Aron and wait 5 working days for a response, no mention of him closing down over December - phew! I sent the photo that I had taken that day (see photo above) and gave a quick run-down of her condition, including that she was suicidal and that she was coming up with ideas on how to kill herself and begged him to help us. I got an automated response saying due to the increase in patients, I may need to wait up to 5 days. Phew! At least I had got in my request before the deadline. (We eventually travelled to meet the man. See that blog post here: Meeting Dr Aron).


I waited and waited and waited, hoping it wouldn't be 5 days due to my impatience issue that I mentioned before. Strangely I never once thought that I wouldn't receive a response. I checked my email all the time and then he phoned me! It was Tuesday afternoon (2 December). We had a chat about Tomato and the severity of her skin and how we had literally tried everything, so I wasn't sure that his method would help us. He made promises and we joked that he sounded like a used car salesman, telling me what I want to hear and I admitted that I wouldn't be taken in by a used car salesman's promises! He then said that I should only go ahead if this resonates with me. That word speaks volumes. I have NEVER heard that word uttered by any other healthcare professional. To me, that was a sign, confirmation. When he used the word "resonate" I immediately knew that this was going to work. I also told him that Tomato was taking anti-anxiety meds and she was currently using Vaseline and Steroid cream on her skin twice a day. She hadn't bathed since I tried on Sunday and before that, it was at least a week, probably two or three. Dr Aron said she may NOT use Vaseline on her skin again as it was the perfect breeding ground for bacteria and he warned that the first application of the cream may hurt her. My heart sank. But he promised that after the first application she wouldn't mind. I was a bit concerned because me forcing cream on Tomato in the past, had caused a lot of her anxiety and I told him this.

Dr Aron asked to talk to Tomato but she was too timid to ever speak to anyone (that's what eczema does to children, it robs them of their confidence), so I put him on speaker. He was so kind to her and drew her out of her Eczema-induced introverted shell. He told her that she needed to put the cream on (a huge ask in itself to apply a cream) and she wasn't impressed. He told her that it was magic cream and he had made it specially for her and had sent it on a huge Jumbo Jet. He asked her if she knew what a Jumbo Jet was and she whispered that she did. He went on to tell her that she needed to make sure her mommy collected it at the pharmacy right now because it was waiting for her! He then told her she needed to stay home from school and get creamed 6 times a day for 5 days. In exchange she could relax at home and not worry about school and homework. He then asked if she was good at maths and asked her 3 sums that she had to work out. He told her she was a super star and she was sold! She promised to try the cream. I thanked Dr Aron and we went to get the cream!

I had seen on the video that the modern world did not like mixing creams but I did not expect the reaction I got from the pharmacist! He said "I'm leaving in 15 minutes, I don't have time to mix creams!" After a heated exchange he stormed off to mix the cream. The pharmacy was only closing in 45 minutes, so I was not impressed, I was a mother on a mission! I was so excited to get started, I felt like applying it in the car! 

Day 1
As soon as we got home I applied a layer of cream. I am the M-A-S-T-E-R of distraction, having had to apply so many different medications to Tomato's skin over the years, so I sat her on the kitchen counter with my ipad and allowed her to play games (huge treat). I watched her play the game and talked to her, asking questions about how it worked, while I creamed. I knew the very sore, open wound areas on her body, like the back of my hand, so I waited to apply cream to these areas last. When I began on her ankles she started going wild, screaming in pain, but I calmed her down and asked her questions about who was who in the game and eventually I got her whole body creamed without too much fuss. I then let her play on the ipad until dinner was ready, as I knew that would take her mind off her skin and the constant itch.  Our kitchen counters are made of black granite and when she got off, I could write my name in the dry skin flakes that had landed on the counter during the 10 minutes that she had been sitting there scratching. 

I let her stay up later that night so that I could get another application on her, again while she played on the ipad, this time I found a quick video on funny animals that would entertain her. She didn't complain at all about it being sore. That night she went straight to sleep!! That had never happened before. Usually I spend the whole night begging her to relax and tickling her back so the itch wouldn't take over. I got to eat dinner with Hubby AND I got to watch some TV uninterrupted!! Whoo hoo!  Every time I checked on her she wasn't scratching! She was sleeping!! I even pulled Hubby out of bed to show him how her ankles were already looking different, they weren't dry and flaky anymore! He told me that I was getting ahead of myself, we had been here before, we had been promised the world by so many doctors, he firmly told me that I should be cautiously optimistic but manage my expectations. I knew he was right but I made him look at her ankles (with the torch from my cell phone) and he had to agree that they looked red but not dry and flaky! NOTHING was going to stop me being excited. Deep down I just knew that this was the answer, it just felt right. It resonated with me.
20 hours later, the red marks are much lighter and not itchy




Day 2
I carried out Dr Aron's instructions to the letter and the next night she bathed. Not for long, but she bathed, enough to wash the important bits and get out. AND she didn't scream! She was panicky that it was starting to get sore, but she didn't scream like she usually did, like someone was holding her in a tub of boiling water and then splashing her with it. I could already see progress. She was loving watching TV all day as this is not the norm in our house and by Thursday morning (4 December) her skin looked amazing!

Day 3
By Friday (5 December) I emailed Dr Aron telling him about the amazing transformation in Tomato's condition. He was not surprised. I also mentioned that although her Eczema was 90% gone, which was fantastic, the staph was still there, although to a much lesser degree. Unfortunately she did have 3 or 4 big boils which were erupting which were very ugly and painful (and disgusting). Dr Aron suggested that we give her a penicillin-based oral antibiotic. I mentioned that Tomato had finished a 7 day course of Augmentin in mid-November, so I was concerned and I wasn't sure if she was able to tolerate it again so soon. I loved his response. She can have more antibiotics if we feel it is necessary. He used the word WE! We were in this together, making decisions about the treatment together - that was comforting. He obviously understood my discomfort with using more antibiotics and after seeing some photos of the staph as per his request, he suggested that I bath her in a very diluted surgical scrub solution for 5 days to see how she goes. It had to be very diluted so as not to irritate her skin and cause a flare, but still be strong enough to kill off the bacteria. 

36 hours after first application
Here are the staph photos that I took on Friday and sent to Dr Aron. This was our third day into the treatment. The eczema is almost gone but she had about 150 "pimples" all over her body. The first is of her back and the bottom two are of her legs. The purple mark is a scar from a previous boil and the other a large boil. Both legs had boils.
On her back, very slight compared to weeks ago, but still there






  





New pimple on her neck




Dr Aron said that we should reduce the cream applications from 6 times per day to 4 times per day from Monday which we did, but we started using the bath surgical scrub immediately. 

Day 5
Most of the boils have disappeared. I couldn't find any new ones until yesterday when I realised that I wasn't using the scrub right into her hairline and lo and behold she got one on the back of her neck! Sneaky little buggers!! Today it is half the size. 

Day 7
2 days into using the scrub, I could see a huge difference and most of the bumps went away on her tummy. I bathed Tomato in my bath and I spent additional time on one resistant spot on her tummy. While I was washing it, I mumbled half to myself "go away horrible spot, why are you so determined to stay? Go away!" Tomato started laughing and said "Mommy that's my freckle!!" I stopped and had a good look and sure enough, I was trying to get rid of her one and only freckle on her tummy!!! Oh boy did we laugh. Honestly I had forgotten that she had that freckle! It had been hidden under the Eczema for so long, I didn't recognise her "normal" skin! She has told EVERYONE that story!! 
#embarrassing

Day 9
So far, Tomato has had 9 full nights sleep (apart from the playing instead of sleeping that she is now doing with her brother and sister because she isn't sore and itchy anymore!! I have to admit, I love everyday parenting challenges.) She no longer scratches in her sleep and when she wakes up, she opens her eyes and says "Good morning" without getting panicky and scratching herself raw before even getting out of bed! She is a completely different child. She used to be clingy and needy and now she is a pleasure. She is acting her age instead of regressing into baby language and today for the first time in 9 days she cried, not because of her skin, but because her siblings didn't include her in a game! I know that this may sound ridiculous to most people, but this is ABSOLUTELY WONDERFUL for our family. We are laughing and having fun like a "normal" family.

Tonight Bacon (age 6) asked why I was taking a photo of Tomato's back and I told her that I needed to see how much better her skin is getting. Bacon stroked her back and said "Oooh your skin feels just like my skin!" Tomato beamed with pride. The sandpaper skin was gone, her wish for skin like her siblings had eventually come true. 
Beautiful smooth skin on her back

Knees are still being stubborn (and ankles)

Legs still looking bad. Eczema mostly gone. Staph and previous scarring.
Day 12
I contacted Dr Aron and told him that most of the staph had cleared but the more resistant areas of Eczema were taking longer, otherwise her skin is silky smooth. He suggested we continue with the diluted surgical scrub in the bath for another week but to reduce the applications on all areas (even the clear areas) to 3x per day and the more stubborn areas to 1x per day (giving the more stubborn areas an extra creaming.)

Day 14
Christmas has come early this year!!!!  
2 Weeks later and Tomato's skin is looking amazing and feeling soft and silky! Honestly I did not think that her skin would ever be "normal." We have our little girl back. At long last, she may be able to enjoy what is left of her childhood. We know that Dr Aron does not promise a cure. But what he has done for my daughter's skin and for my family's sanity, is indescribable. He was right when he told Tomato that this is "magic cream." I have no doubt that our lives will be better and the suffering will be less. We will meet flares if and when they arise as we are now members of the Dr Richard Aron army. Together we will fight against this debilitating disease that steals childhoods and turns parents into crazy-people. 

I am so very grateful for seeing that video and joining the Facebook page. I really feel like I am amongst friends on that page. Friends who are further down that path than we are, but friends who are willing to assist however they can, because they know first-hand, what happens in families, whose children have been diagnosed as "just" having that pesky thing called Eczema.





"Eczema is not only a disease of the skin, 

it's a disease of the soul"



If you'd like to follow our progress click on this link: 3 Months After Starting with Dr Richard Aron 


Other links to blog posts about our journey with eczema:

Is Avene the Miracle We have been waiting for?


Nine Months Later with Dr Richard Aron

Meeting Dr Aron - A Dream Come True



Post Script - August 2015

One of the moms who was interviewed on the TV show (link above) agreed to give a quick update on how her son is doing today:
"It is great to see Dr Aron’s work being promoted and reaching as wide a public as possible. As our son was treated many years ago, I think his experience since his initial treatment will be of interest to those who are considering treatment now. 
I met Dr Aron 7 years ago when my 5-year old son, Aidan, was suffering badly from eczema. We had tried endless treatments from dermatologists, homeopaths, pediatricians etc over the years and nothing had ever worked for more than a few days relief.Dr Aron’s treatment, however, was like the miracle cure one sometimes read about and secretly hoped for for one’s own child. It was so dramatic you could almost see the eczema receding before your eyes. By the 2nd day of treatment he started sleeping through the night – something we hadn’t experienced in years! The relief for him – and for the rest of our family – was profound. 
More importantly, Aidan’s severe eczema has never returned in the 7 years since his initial treatment. Nor have we used the ‘Dr Aron’ cream at all in the last 5 years except for 2 short flare-ups (a week or less). 
Aidan was a child with an exceptionally high IgE and had many food and environmental allergies as a baby and young child. Dr Aron was clear that his treatment would not take away Aidan’s allergies, but would simply help his skin to cope. So Aidan remained on a fairly restricted diet for many years and he needed to bathe after playing on the grass or he would become very itchy. Two years ago, we re-tested Aidan’s allergies (with Dr Adrian Morris in Cape Town – someone I can also recommend), which confirmed that Aidan had outgrown his food allergies but remains allergic to grass and tree pollens. 
Aidan continues to have beautiful skin. We have looked for - and never found - any sign of thinning skin from the treatment he used so many years ago, which included a prescribed mix of moisturizer, cortisone (and initially) antibiotic creams. He plays both rugby and cricket despite remaining allergic to grass and is able to manage this by bathing after games and applying a simple moisturizing cream. Additionally, I still use a special laundry soap as regular detergent seems to be an irritant. Besides the above – Aidan’s life is completely normal and we remain deeply grateful for his treatment with Dr Aron!" - Julia Cain





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