Wednesday, 28 May 2014

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): 


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


Tuesday, 13 May 2014


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

Monday, 5 May 2014


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




Sunday, 4 May 2014


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.