laurenjohnsonsmom Posted January 11, 2010 Report Posted January 11, 2010 I recently have seen PEX used and referred to as plasmapherisis. It confused the heck out of me so for the newbies out there (which was me not to long ago) and for those that have been incorrectly using the word "PEX" when they are actually describing plasmapherisis. Let's define... This is Buster's "very easy to understand" description... PEX is plasma Exchange -- you put in someone else's for your child's Plasmapherisis -- you take out your plasma and replace it with Albumen IVIG -- no removal of your plasma, you just add a very sterilized version of someone else's in addition
laurenjohnsonsmom Posted January 11, 2010 Author Report Posted January 11, 2010 Oops! Was typing so fast I forgot the "r' in difference. In regards to "PEX". I want to note that as it was explained to me, you are taking out the bad antibodies from your child's blood and adding back in donor "good antibodies" so esentially it is Plasmapherisis WITH IVIG added into it!
dcmom Posted January 11, 2010 Report Posted January 11, 2010 Sorry- I am one of the culprits. My dd had plasma pheresis, which I typically write as pex to make typing faster, simpler. You are correct, however in the differences. I believe all on this forum have actually had pheresis and not pex.
peglem Posted January 11, 2010 Report Posted January 11, 2010 Wanted to remind everyone, because I just had to go look it up myself, that Swedo used plasma exchange (PEX) in her study.
coco Posted January 12, 2010 Report Posted January 12, 2010 Good point -- altho I know the difference I always say PEX as an abbreviation for Plasma Exchange, as I think most on the forum do.
T_Mom Posted January 12, 2010 Report Posted January 12, 2010 hmmm... We may be getting too technical on the forum--the NIMH website seems to indicate the terms are the same process (?) from the website: http://intramural.nimh.nih.gov/pdn/web.htm Q. What about treating PANDAS with plasma exchange or immunoglobulin (IVIG)? A. The results of a controlled trial of plasma exchange (also known as plasmapheresis) and immunoglobulin (IVIG) for the treatment of children in the PANDAS subgroup was published in "The Lancet", Vol. 354, October 2, 1999. All of the children participating in the study had clear evidence of a strep. infection as the trigger of their OCD and tics, and all were severely ill at the time of treatment. The study showed that plasma exchange and IVIG were both effective for the treatment of severe, strep. triggered OCD and tics, and that there were persistent benefits of the interventions.
laurenjohnsonsmom Posted January 12, 2010 Author Report Posted January 12, 2010 Hi TMom, I would not call it "to technical" as there is a BIG difference in PEX and plasmapherisis. I will be the one to say, and not the first one, "the NIMH is WRONG calling the two the same thing". When doing PEX youre introducing two variables at the same time. That makes it harder to know which variable is working when you get them done together the "pherisis" or adding "the good antibodies". Not to mention, Dr. Bouboulis just told me on Sunday, that doing PEX vs. Plasmapherisis followed up by IVIG does involve more risk. Just my thoughts... Wasn't there a thread, not to long ago, that was talking about how incredibly inaccurate the NIMH website, regarding PANDAS, was and how it needed updated/changing? Lynn hmmm... We may be getting too technical on the forum--the NIMH website seems to indicate the terms are the same process (?)from the website: http://intramural.nimh.nih.gov/pdn/web.htm Q. What about treating PANDAS with plasma exchange or immunoglobulin (IVIG)? A. The results of a controlled trial of plasma exchange (also known as plasmapheresis) and immunoglobulin (IVIG) for the treatment of children in the PANDAS subgroup was published in "The Lancet", Vol. 354, October 2, 1999. All of the children participating in the study had clear evidence of a strep. infection as the trigger of their OCD and tics, and all were severely ill at the time of treatment. The study showed that plasma exchange and IVIG were both effective for the treatment of severe, strep. triggered OCD and tics, and that there were persistent benefits of the interventions.
T_Mom Posted January 12, 2010 Report Posted January 12, 2010 Hi Lynn--My point exactly! Perhaps my sarcasm was a little too vague-- I agree! I agree! TMom Hi TMom, I would not call it "to technical" as there is a BIG difference in PEX and plasmapherisis. I will be the one to say, and not the forst one, "the NIMH is WRONG calling the two the same thing". When doing PEX youre introducing two variables at the same time. That makes it harder to know which variable is working when you get them done together the "pherisis" or adding "the good antibodies". Not to mention, Dr. Bouboulis just told me on Sunday, that doing PEX vs. Plasmapherisis followed up by IVIG does involve more risk. Just my thoughts... Wasn't there a thread, not to long ago, that was talking about how incredibly inaccurate the NIMH website, regarding PANDAS, was and how it needed updated/changing? Lynn hmmm... We may be getting too technical on the forum--the NIMH website seems to indicate the terms are the same process (?)from the website: http://intramural.nimh.nih.gov/pdn/web.htm Q. What about treating PANDAS with plasma exchange or immunoglobulin (IVIG)? A. The results of a controlled trial of plasma exchange (also known as plasmapheresis) and immunoglobulin (IVIG) for the treatment of children in the PANDAS subgroup was published in "The Lancet", Vol. 354, October 2, 1999. All of the children participating in the study had clear evidence of a strep. infection as the trigger of their OCD and tics, and all were severely ill at the time of treatment. The study showed that plasma exchange and IVIG were both effective for the treatment of severe, strep. triggered OCD and tics, and that there were persistent benefits of the interventions.
MichaelTampa Posted January 12, 2010 Report Posted January 12, 2010 Regarding the plasmapheresis, where albumin is added, where does it come from. Wikipedia says eggs have lots of it, and medically it normally comes from other humans or cows. If one real distinction is that the plasmapheresis doesn't involve a second variable, I'm not quite sure what we would look at it that way. If products from human blood are to be considered a variable, I would think products from blood of another species would be considered even a greater variable. Or is the albumin really from food, or chemically produced? Michael
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