Update From Oz.

[WayneL]

Hi, Everyone.

Just an update from us and our daughter on what's been happening here.

She recently [2 weeks ago] returned from an extended stay in St Vincents Hospital in Melbourne where she underwent a large array of tests.'

The results were that she has cerebral Vasculitis [being treated with steroids] and a high Lupus and ACL anti-body count.

We will return to the hospital clinic this week to see Dr Godfrey and discuss putting her on Clexane.

She was taken off Warfarin for a week, due to some tests that it would interfere with, and the difference was remarkable.

Yesterday we went and had blood tests [Thyroid & Liver function] just to see if her system is coping with the larger dose of steroid she is having this week.

When we have more news, I'll let you know.

Hope your days are better and enjoy the Olympics. Go OZ!

Wayne L

[MaryF Administrator]

Good on you, Wayne, glad to hear your news. my own daughter 15, SLE lupus and probable Hughes, as written up by paediatrician, on Plaquenil and Aspirin...and seizure things down to up to three a day to sometimes none and before that up to 12.. so more than pleased for you! It really is good to read about the porgess, I could not be more pleased Mary F x

[daisy11]

so good to hear that you are sorting things out. Myself and daughter have Hughes, Lupus (she is 16) and she is on Plaquenil and Aspirin. I am on Warfarin, Clexane, Plaquenil and statin amongst other things. I too have cerebral APS, when my INR IS TOO HIGH - dreamy and when it is too low the same, just getting a balancing act. Hard work!!!

Take care

[traceylou]

Very interested in the cerebral vasculitus bit, ditto keep me posted.

[WayneL]

Thanks.

Will try and keep you in the loop.

Wayne L

[WayneL]

Hi, All.

just a side note on the Vasculitis.

Her specialist has doubled the dose of the steroids for a week and then returned it to her original dose. There has been some noticeable improvement in her cognitive abilities, and her levels of clarity ( less foggy moments) so it is a positive outcome from my perspective.

We are going tto request that she be put on Clexane as sson as we can, as we feel this will aid in her general wellbeing, given her responsiveness to it in hospital.

This will be dependant on the specialists agreement of course.

Wayne L

[jessielou]

Hi Wayne

Good to hear from you and great to hear that the hospital and Dr Godfrey are getting thins sorted, thank goodness for that!

Hope you all coping and doing ok.

Take care gentle hugs love Sheena xxxxxx