PowPow Posted August 22, 2014 Report Share Posted August 22, 2014 (edited) This may be very helpful for securing some testing from a local doctor, or one not as versed in AE and the like. It is short (which always helps!) and even has a little flowchart to point out different manifestations and labs to check. This testing found the cause of my daughter's very, very severe PANS-- which we had been told was: PANDAS (w/o strep) LYME BABESIA DETOX SNP (gene) phase I & Phase II issues. I know that many of you have found healing from these avenues. I am very happy for you. For those of you who have not-- I am very afraid you could missing the proverbial "forest for the trees". We were. Our daughter has a life now and has had it for quite a while. Please print this and take to your family doctor, local neuro- whoever! I know at least one main PANDAS doctor is now testing for these things, at least in severe cases. http://journals.lww.com/co-rheumatology/Citation/2014/09000/Pediatric_inflammatory_brain_diseases__a.13.aspx This is the abstract. The full text is linked to the "parents of kids with PANDAS/Pitands" facebook page- but I may be able to send it to you, if you are interested. Edited August 22, 2014 by powpow Link to comment Share on other sites More sharing options...
msegal7 Posted August 22, 2014 Report Share Posted August 22, 2014 Thank you so much for posting. I am not on fb, but would really like to read the full article. Can you email it to me? Please let me know how to proceed. Thanks again. Link to comment Share on other sites More sharing options...
PowPow Posted August 22, 2014 Author Report Share Posted August 22, 2014 I just pm'd you! Link to comment Share on other sites More sharing options...
putting together the piece Posted August 22, 2014 Report Share Posted August 22, 2014 I would like the full article as well. Could you please send it to me too? Thank you. Link to comment Share on other sites More sharing options...
frikfrak Posted August 22, 2014 Report Share Posted August 22, 2014 Hi, could you send me the article as well, thank you so much. Link to comment Share on other sites More sharing options...
PowPow Posted August 22, 2014 Author Report Share Posted August 22, 2014 PM'd you. If you would like me to email it to you (only way I can figure) , please PM me email address. thanks. Link to comment Share on other sites More sharing options...
Surfmom Posted August 24, 2014 Report Share Posted August 24, 2014 Dr. Van Mater and her colleague Dr. William Gallentine (D.O in neurology) have been our daughter's physicians for almost two years. These two work so closely together that when you see one, you typically see the other in clinic. I can't say enough about Dr. Van Mater's professionalism and dedication. Our daughter has one of the most profound and treatment-resistant cases known, so If you have questions about Dr. Van Mater or diagnostics/treatment at Duke, fire away. Link to comment Share on other sites More sharing options...
PowPow Posted August 24, 2014 Author Report Share Posted August 24, 2014 How is your daughter, surfmom? Link to comment Share on other sites More sharing options...
anonymous0121 Posted August 25, 2014 Report Share Posted August 25, 2014 I would love a copy of the article too, my son continues to deteriorate, pans clinic did autoimmune testing, all came back normal, but he has all symptoms and been diag for years, but no treatments are helping...could you share what treatments are helping your daughter? Link to comment Share on other sites More sharing options...
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