FINALLY ..... a break!

Since March this year Eden have consistently flared every 2 to 3 weeks ... but we have finally had a break!! We are at the 4 week mark without any flares and her skin is looking sooooo good ... better than it has in months!!
She is now 14 months TSW.

We stopped using all ointments and moisturisers / creams ... and only added a few drops of lemon grass oil (suggested by Isaiah's mom .... genius!!) to a small tub of pure zinc ointment ... can't believe the difference it has made!

We have basically gone through moisturiser withdrawal but felt it still essential to apply this lemon grass / zinc ointment balm to the infected areas as the lemon grass is an anti-fungal and antiseptic. Her legs and arms are still full of sores from the previous flare (the last flare have lasted for an entire month so, you can imagine the skin damage...) but who's complaining??? We are just happy that we have had this break ... Eden is so relieved and all the kids and teachers are commenting on how beautiful her skin is looking ... let's hope this is the beginning of the end of this long journey.

Either way ... we are still extremely grateful to see improvement in body, mind and spirit.

Lymph glands

Okay, so I know everyone that experiences TSW are having enlarged lymph glands ... which thankfully disappear once they are cured.
BUT
Eden's lymph glands have swollen and been popping up everywhere ... behind her ears (it's almost 2cm big), under her armpits, in her groin area, on the side of her ribcage ... that one stands out like a marble.

SO,

my GP ... who completely supports and respects what we are doing have suggested that I put Eden on a course of antibiotics ... just to see if the glands will go down (or some of them at least) ... and if there's no improvement by end of next week then she needs to have blood tests done to rule out any other underlying conditions.

I'm not too stressed about it ... sure she will be fine.
So, she's currently on some antibiotics (urgh) but, I see it as an experiment...there's nothing to lose ... just another flare closer to the final flare....so in my husband's words:  "bring it on"  .... (yeah right lol)

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.