13 months flare

I've noticed a pattern since March this year: she flares every 2 1/2 to 3 weeks and it takes at least a week before the flare starts calming down and she can return to school.

Here are some pics of her skin (currently): 

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The bottom pic of her legs were taken  in a darker area in our house  ... she's not really that purple.

I posted 2 pics of her legs ... the one below was taken today and the one underneath it was taken a year ago ... seems like when she's flaring her skin looks almost exactly the same as it did a year ago.

This is so incredibly frustrating ... I've read about so many people on the forum that are still experiencing these horrible flares 24 to 30 months into their withdrawal.... I truly hope life will turn around for Eden now ... in the very near future ... this has been such a long road and I have honestly thought that by 1 year we would start seeing improvement on a consistent basis ... but instead I've seen flares that come consistently every 2 to 3 weeks ... 

What I can say (on a positive note) is that her skin recovers a lot quicker after each flare than it did a year ago. 

So despite all my whining ... there's still progress and things to be grateful for.

Her most recent flare:

1 year ago

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Progress

Even though Eden is far from healed ... I have noticed large patches of skin clearing more and more on her legs) ... her legs and arms have definitely had it the worst so I am truly grateful to see such improvement.

At the moment it's just the front of her legs ... the back of her legs still need a lot of healing BUT who's complaining? Certainly not us ... seeing where we were and where we are now.

Below is a picture taken at 7 1/2 months: 

And this is a picture that I took on Sunday (1 year mark) ... AMAZING IMPROVEMENT!! 

We are slowly but surely getting there!!! Whoohooooo

Anniversary

Celebrating her 1 year tsw anniversary ... with yummy taco's

CELEBRATING GOING FROM THIS .... (WHILE STILL ON CORTISONE)

TO THIS ... 1 MONTH INTO TSW

TO THIS ... 1 YEAR LATER

1 YEAR TSW

We have finally made it to 1 YEAR TSW!!!!

Eden is busy recovering from a nasty 2 week flare ... she's left with a lot of skin damage, sores etc but the flare is better ... she's still itchy... but the worst is behind us in terms of the past 2 weeks.

We have bathed her in organic apple cider vinegar and recently I've added dead sea salt. Put an anticeptic cream on the open sores and bepanthen baby bum cream on her face ... it's worked miracles for her dry skin the past week!

She's on strong probiotics and trace minerals.

I haven't given her any antibiotics yet as I really want to give her skin time to heal by itself ... but will see how it goes.

She'll return to school tomorrow and got so many supportive messages from the kids in her class and their parents saying how they will be there for her and that she must get well soon.

It makes this journey so much easier.

Below are pics I've taken last night ... still need time to heal but she looks a lot better than 2 weeks ago.

2nd week flare NEARLY 12 MONTHS IN

So frustrating!!

Eden is now in her 2nd week of flaring ... the redness have gone down and a lot of her flare has calmed down ... she's not so sore anymore ... she can lift her neck slightly again but but BUT her skin is dry and flaky and itchy and she's butchering herself ... her face is full of sores and infection and skin is peeling.

I am taking her to our GP tomorrow to get a course of antibiotics as the infections are bad...I prefer the homeopath but at the moment nothing seems to help...not even our homeopathic treatment.

Guess it's just one of those things that need to be waited out.

Here's some pics taken this morning of her face: It's so frustrating when you have come so far and have had such a lovely relative calm and recovery period and then out of nowhere a flare from hell hits.

Almost 1 Year TSW

I've heard of many people that have flared around the 1 year mark.
We have flared at the almost 11 months and now again at the almost 12th month mark ... every day her flare seems to be getting worse ... probably because she has infection now ... she is so so sore!!

I have only taken pics of her face (not her body) ... she cleared beautifully and at one stage I was almost certain we were on the path to full recovery but now I have to give into another dose of antibiotics and hope for the best.

I have seen Eden's skin improve dramatically over the past few months so I know it is possible ... healing is possible ... it's better than being in that awful stagnant phase ... just have to keep the faith.

These photo's were taken Yesterday ... I am too scared to see what she looks like today (she's still sleeping) :(

Extremely tight and dry skin

Perhaps it's the change of seasons? We are heading into winter now and every winter Eden flares really bad ... it started on Friday and her flare in terms of intense redness etc haven't actually gotten worse but the dryness is so unbearably uncomfortable, she cannot even lift her head as her neck is too tight.

I'm contacting a Dermatologist that does UV light therapy ... perhaps it's a good idea to start her on light therapy for the winter.

She's staying home for the next few days, she's very teary and miserable today ... just staying in her bed.

I am curious to see how long it takes to settle down again.

I don't have the best quality camera so the detail of Eden's skin could not be captured ... hopefully you get some idea ... even her eye lids are flaking at the moment.

 Not lifting her head too much as it hurts around her neck (skin too dry and tight)

Legs are extremely dry and flared but we've seen a lot worse and won't ignore the fact that there's definitely progress.