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