marilina Posted February 8, 2012 Report Posted February 8, 2012 (edited) hello all I thought I would be happy because soon I should finally do the IVIG to my daughter As you may know here in Italy there are NOT doctors experienced in PANDAS But we are getting the chance to make IVIG, paying them, as my daughter has other immune problems the problem is that where I will do the IVIGs they'll start with a low IVIG dose: 0.4g/Kg I know that low-dose IVIG may help for immune problems, but they are pro-inflammatory for PANDAS Please can you help me to find recent studies that support the use of high-dose IVIG (at least 1.5 g / kg've read) for PANDAS? marilina Edited February 8, 2012 by marilina
bigmighty Posted February 8, 2012 Report Posted February 8, 2012 hello all I thought I would be happy because soon I should finally do the IVIG to my daughter As you may know here in Italy there are NOT doctors experienced in PANDAS But we are getting the chance to make IVIG, paying them, as my daughter has other immune problems the problem is that where I will do the IVIGs they'll start with a low IVIG dose: 0.4g/Kg I know that low-dose IVIG may help for immune problems, but they are pro-inflammatory for PANDAS Please can you help me to find recent studies that support the use of high-dose IVIG (at least 1.5 g / kg've read) for PANDAS? marilina Sorry, I have no studies. But just as an FYI - My son weighed in the 78-80 pound range in May and June of 2011 when he had his IVIGs at NIH. First visit - IVIG dose was 35.3 grams on each of two consecutive days. Second visit – dose was 35.7 grams on each of two consecutive days. I am assuming that NIH has a clue about the necessary treatment level for PANDAS. I believe that Dr. Bouboulis said that this was fairly high.
marilina Posted February 8, 2012 Author Report Posted February 8, 2012 thank you bigmighty the problem is that my daughter has not ONLY PANDAS, but autism and PANDAS togheter, so PANDAS and other immune-issues so, what work for PANDAS can work not for autism-PANDAS kids.....
peglem Posted February 8, 2012 Report Posted February 8, 2012 hello all I thought I would be happy because soon I should finally do the IVIG to my daughter As you may know here in Italy there are NOT doctors experienced in PANDAS But we are getting the chance to make IVIG, paying them, as my daughter has other immune problems the problem is that where I will do the IVIGs they'll start with a low IVIG dose: 0.4g/Kg I know that low-dose IVIG may help for immune problems, but they are pro-inflammatory for PANDAS Please can you help me to find recent studies that support the use of high-dose IVIG (at least 1.5 g / kg've read) for PANDAS? marilina Here's something, but also check out the related citations list. http://www.ncbi.nlm....pubmed/20041883
Kiera Posted February 8, 2012 Report Posted February 8, 2012 Most of the experts recommend 1.5g/kg for pandas, the NIMH study is using 2g/kg I believe but that is under a very controlled envoirnment and the kids are purely pandas with recent onset. I guess they want the most bang for the buck to try to prove ivig works.
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