Rain Posted August 15, 2011 Report Posted August 15, 2011 Long story short, we convinced our local Dr.s to administer IVIG for my DS10's PANDAS based on Dr. K recommendation, and the NIMH's IVIG PANDAS study. Both specifically recommended "Gamunex." 1. Fighting for insurance coverage today, we found out "Flebogamma" was ordered for the IVIG treatment scheduled for tomorrow. I understood that Gamunex was specifically recommended because it has the fewest side affects. What is Flebogamma - and is it an OK substitute? 2. I am feeling really uneasy now. While Dr.s here have been supportive (and basically have done everything that I have asked), I am tempted to pull out of the procedure for tomorrow, and arrange a trip to Chicago and have Dr. K administer the treatment. Can anyone help?
Dedee Posted August 15, 2011 Report Posted August 15, 2011 Can you call your local provider and ask? We used Gamunex also based on Dr. Murphy's recommendation, but there may be a reason for the Flebogamma. Could it be similiar to Gamunex but produced by a different company? I completely understand your concern though. I would be asking the same questions if I were you. Good luck on your search. Dedee
PowPow Posted August 15, 2011 Report Posted August 15, 2011 There are lots of different brands & somewhere on here Buster had a chart comparing different brands. I have no idea if they are really that diff or not. Our PANDAS doc used Gammunex in office for one kid, but Georgetown used Privigen for our other child. Price is the issue there. Both kids got the headache, vomiting. As far as results-- I cannot compare the two kids- they are apples and oranges, however the privigen one is in better shape the than gammunex recipient. Probably has nothing to do with the brand IVIG. If this is the only way you can get it (cannot afford Dr K or travel) then go for it.
Rain Posted August 15, 2011 Author Report Posted August 15, 2011 OK - I called the nurse, and got it worked out. Apparently on the order, no brand was specified. I clarified that it should be Gammunex - but they can't get the drug until Wednesday. So IVIG in two days - not tomorrow.
PowPow Posted August 15, 2011 Report Posted August 15, 2011 Best Wishes for you on Wed-- let us know how it goes!
Rain Posted August 17, 2011 Author Report Posted August 17, 2011 Thanks all. We're here - Gamunex is a-drippin'. Insurance appeal initiated. :-P
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