anneca Posted January 17, 2011 Report Share Posted January 17, 2011 This is my first time posting, so forgive me if this question has been posted before. My son recently started seeing a psychiatrist who suggested PANDAS. Dr. Thienemann suggested sending blood samples in to dr. Cunningham's study in Oklahoma. The results came back clearly in the range for PANDAS. So after a round of antibiotics that did not help, I contacted Dr. K in Chicago and forwarded him the Cunningham results, to hopefully go forward with IVIG. He requested additional testing (ASO, IGG, Dnase) and just today i saw that the results came back in the normal range. What does this mean? It seemed to me that the Cunningham results were conclusive, but do normal results on the other tests mean he might not have PANDAS?? I was so hopeful that something might be able to help with his OCD, Tics, separation anxiety, etc.etc.... Wondering if anyone might have had a similar experience. i would so like to get some feedback... thanks very much...!! Anne in Calif. Link to comment Share on other sites More sharing options...
butterflymom Posted January 17, 2011 Report Share Posted January 17, 2011 (edited) = Edited February 3, 2016 by tampicc Link to comment Share on other sites More sharing options...
anneca Posted January 17, 2011 Author Report Share Posted January 17, 2011 thank you so much for the quick reply. we will probably do a phone consult and go to Chicago for the treatment. At least that's what our ped's other PANDAS patients do... haven't made any plans yet. thanks for allowing me to sleep tonight!! Link to comment Share on other sites More sharing options...
nicklemama Posted January 17, 2011 Report Share Posted January 17, 2011 I could write your post. My DS's CamK came back in PANDAS range. His ASO and anti DNAse 2 titers are normal. He started treatment in Oct 2010 and we have seen him have improvement of about 95% after antibiotic therapy. He's still on it. Link to comment Share on other sites More sharing options...
sf_mom Posted January 17, 2011 Report Share Posted January 17, 2011 We also saw Dr. M T and she was wonderfully supportive of our efforts to get our family well!!! Our older son, 6 1/2 years old, who was originally diagnosed with PANDAS with elevated CaM also had 3 hdIVIG via Dr. K has since been diagnosed with Lyme Disease. He currently has no OCD and no TICs and treading toward recovery from LD. Many are working with two wonderful Dr.'s in the Bay Area that are LLMDs and understand both PANDAS/Lyme and one would prescribe hdIVIG if it was required for PANDAS. They will be happy to help investigate potential other infections/viruses/parasites/molds/toxins/other potential abnormal labs, etc that might be contributing to PANDAS symptoms beyond just strep. Please PM for Dr. names if you are interested in investigating further in advance of hdIVIG treatments. -Wendy Link to comment Share on other sites More sharing options...
Phasmid Posted January 18, 2011 Report Share Posted January 18, 2011 (edited) Hi, The CamK test is NOT technically a diagnostic test at the present time. The other tests have been approved for use in diagnoses of exposure and/or infection with Streptococcus. The diagnosis of PANDAS remains a clinical diagnosis. The tests that indicate presence or exposure of Strep are confusing when applying to a PANDAS diagnosis, but together with the clinical picture, they help. My son's present doc, (we are in CA too), never asked for any testing except for basic labs and immune panel, but went on presentation, history, and response to antibiotics. Edited January 18, 2011 by Phasmid Link to comment Share on other sites More sharing options...
Buster Posted January 18, 2011 Report Share Posted January 18, 2011 I agree with all the other posters. The clinical presentation is the most important. All the other tests (including cunningham) just help round out the picture. ASO is at best a coin flip. AntiDNAseB has a very fixed time window and rate of fall is not known. Igg helps with identifying an immune deficiency, but PANDAS isn't an immune deficiency in itself -- the immune system (if anything) is overactive. with you the best, Buster Link to comment Share on other sites More sharing options...
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