Tuesday, 17 September 2013

Almost 6 months Cortisone Free

Just an update on Eden's progess (I copied and pasted my forum post below):

Almost at the 6 months mark ... Eden is refusing to bath ... her skin is on fire (AGAIN) for the millionth time the past few months.

She's also developed swollen lymph glands all around her body including the groin area (is this normal??) 
Her breath smells (think tonsillitis is starting again) and our homeopath picked up that she's suffering from Reflux (something she had as a baby).
She complains from extreme back ache and shoulders that ache (not the skin but into the bone).

The skin odour is also there ... it's the strangest smell ... it's not a dirty smell but it's still unpleasant ... it's so weird I can't explain what it smells like (it's very unusual).

She goes through about 1,5litre ointment a week.... constantly applying ointment ... should I see this as an OCD or normal and nothing to worry about?

Her skin is ITCHING ... LIKE CRAAAAAAAZY 

she's still flaking a lot ... I wash her bedding daily ... vacuum and wash floors ... etc etc.

She takes pain killers at night as well as an anti-histamine and then early hours of the morning she wakes up with insomnia but I found an over-the-counter pill called Melatonin (natural hormone) and this helps her sleep again.

What I do find is that even though her skin has red patches, flaky patches, bumps and sores .... there are patches on her skin that seems to be clearing up ... where it seems like normal skin is coming through ... is this the beginning of her healing perhaps?

We were both in tears last night .... it's such an emotionally, physically and spiritually daunting and exhausting time ....

but, the sun still shines brightly every day ... and there's definitely progress .... for example ... she can tolerate the sun now (not for hours and hours but it's a start).... and her appetite is back in FULL FORCE (she use to wear children clothes for ages 11 to 12years) before TSW but now she fits into 7-8years years clothes.... skinny little thing at the moment.

Below are pictures of Eden's legs about 2 months ago ... this was HELL HELL HELL for her 





Currently at almost 6 months: She applies ointment a million times a day hence the shine but sometimes clear fluid runs out of her skin and then it also shines this way (however in this pic it was the ointment).

Also notice the purplish skin colour ... 
In all of this I (we) can DEFINITELY see progress ... it's not an easy road but never for a moment are we looking back.



3 comments:

  1. Hi Eden's mum!

    It's painful to see Eden's suffering. Does her skin show any patterns of flare followed by periods of relative calmness, or is she in a constant state of flare all the time. And yes it is quite normal to have swollen and enlarged lymph nodes, I myself had enlarged groin nodes.

    Hope everything is fine! Hang in there!

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  2. So sorry she has to suffer like this. I wish we could find a way to speed it up and minimize the tsw. We must keep getting the word out so the whole world knows about this awful beast. Hope she gets a break soon! xo

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  3. Hi there. Eden has a constant redness and itchiness but the burning comes and goes ... and the degree of red also varies. Even though she's going through another flare at the moment she is not as red as in the beginning ... having said that, it's just as sore and burns the same ... we took her to our AMAZING homeopath yesterday he picked up that she's got an infection again ... and today after his meds and stuff she's so much better (still looks bad but feels a lot better).

    We live in SA and NO one knows about it here ... it's so frustrating because we are like the TSW pioneers in SA and when you tell people about it they look at you like you are on drugs or something. LOL

    Have a great day both of you
    Love

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