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New to forum way too old to PANDAS


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LLM, didn't know you can check the coxackies virus titers! my ds had these blisters on the palms of hands and soles of feet 2wks post ivig and now he's terrible. we're checking for other hidden infections and am wondering if maybe the blisters were HFAM dx (it was a very mild case if it was, no fever or mouth sores) but could I do the titer test now to check if these levels are elevated? Do you know what exact test to order? It's coxackie A, right? Going to Pandas Dr on Monday. Thanks so much (sorry to hijack post!)

Yes, you can check coxsackie titers. Quest lists three titer tests on their menu - here's one of them http://www.questdiagnostics.com/testcenter/OrderInfo.action?fn=37477.html&labCode=NEL You can also PM SFMom - this test had significance for one of her kids and she has more info on it than I do.

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Yes, I'll second MDMom's advice: get your DS evaluated for PANDAS/PANS! So many kids suffering from it fall outside the "typical parameters," and your daughter, as you know, shows so many signs!

 

 

I'll third the advice, and keep in mind that the new NIMH website mentions that there are other infections and environmental triggers as well, and so very many of us have found lots of other issues with our kids (immune system is affected, so they are very susceptible to a lot of things...strep, mycoP, lyme, bartonella, babesia, erlichiosis, viruses, etc., etc. If she's had it a long time (your son, too, btw,) you really need to consider looking at the possibility of those, as well.) Also, keep in mind that lyme/co-infections is a clinical dx, so the CDC definition is not necessarily what many of us have gone on. Both my children were PANDAS kids (younger was classic, older was more like your daughter,) and we now see Dr. L, Dr. B, LLMD, DAN, holistic chiropractor (including supplements), and primary care docs. And, they all have their own places in the care of my children. PM me if you want more information. I, too, have older children (16 and 19 now,) and we figured out 19 y.o., because of 16 y.o. (also severe psych issues.)

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Thanks for all the really informative replies! I've spent a good part of the weekend following up the information. Given my DD has epi;epsy--untreated at present and under-investigated when she was dx'ed--I was really interested to find that excess glutamate is implicated in both PANDAS and autoimmune epilepsy. No tests were done for autoimmunity when she was dx'ed with epilepsy. But could it be she has two autoimmune disorders--PANDAS and epilepsy? Her brother has two with PANDAS and Hashimoto's. Hmmm.... My priority this week will be to get all her bloodwork done, as well as the sleep derived EEG she was supposed to do four months ago. When I get the results, I'll see if there is anyone local to follow up with--perhaps a phone consult with Dr. T--while awaiting appointment with Dr. L.

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