Guest guest Posted November 7, 2004 Report Share Posted November 7, 2004 Darla:I have never heard of using steroids to stop the "mito strokes". That is not to say it is not used - I have just not heard that. My boys have had what has been called strokes but one thing that always frustrates me is that there does not seem to be a uniform definition of what a "mito stroke" is. What some people call a stroke, others call a bad day and what some call a stroke, other people call a crash ....in the absence of a clear MRI I just don't think anyone knows enough. In regards to mito strokes, we have always followed the maximize energy delivery and minimize energy demand rule with the boys. In any way that we can maximize energy we do: vitamins and supplements, good nutrition, enough fluid, address anemia, address pain, provide oxygen if needed, etc. We obviously do let them live life to the fullest that they can so even with the above but always our premise is energy delivery must equal energy demand to the extent that is possible. If Asenath's strokes are due to inflammation - what about talking with the doctors about non steroid anti inflammatory drugs? I suppose another question you could ask would be: what about low dose steroids rather than the high? or perhaps you could agree to do an MRI in 3 months and see if more damage has occurred which might lead all of you to think differently about steroids. Would IVIg be helpful for her vasculitis - for some it is? I'm just not sure what the answers are but those are some questions you might ask. Anne J. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2004 Report Share Posted November 7, 2004 Darla:I have never heard of using steroids to stop the "mito strokes". That is not to say it is not used - I have just not heard that. My boys have had what has been called strokes but one thing that always frustrates me is that there does not seem to be a uniform definition of what a "mito stroke" is. What some people call a stroke, others call a bad day and what some call a stroke, other people call a crash ....in the absence of a clear MRI I just don't think anyone knows enough. In regards to mito strokes, we have always followed the maximize energy delivery and minimize energy demand rule with the boys. In any way that we can maximize energy we do: vitamins and supplements, good nutrition, enough fluid, address anemia, address pain, provide oxygen if needed, etc. We obviously do let them live life to the fullest that they can so even with the above but always our premise is energy delivery must equal energy demand to the extent that is possible. If Asenath's strokes are due to inflammation - what about talking with the doctors about non steroid anti inflammatory drugs? I suppose another question you could ask would be: what about low dose steroids rather than the high? or perhaps you could agree to do an MRI in 3 months and see if more damage has occurred which might lead all of you to think differently about steroids. Would IVIg be helpful for her vasculitis - for some it is? I'm just not sure what the answers are but those are some questions you might ask. Anne J. Quote Link to comment Share on other sites More sharing options...
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