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What test do we get for Pandas


kimwal
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I am very new to this but yes I think strep titer and some are talking about a study for the development for a specific pandas test through the university of oaklahoma. The dr's name is madeline cunningham. Other members will likely chime in with more information as I am just begining. Good luck!

 

 

 

 

What test would my son get for pandas???

Isn't is something like strep titers and can we get this done at regular doc's office?

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Rapid Strep Test: To see if he is a carrier, ASO Titers, Anti-DNase B and all can be done at any lab. I suggest you go to pandasnetwork.org and review diagnostic testing section PANDAS are not always indicative of titers. Elevated CaM Kinase is truly the only way to tell concretely PANDAS verses Non PANDAS.... Dr. Cunningham's Study.

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Hello! Currently there is no official test for PANDAS. Doctors will run the ASO and Anti-DNASE titers however, low titers don' t mean no PANDAS. My dd has normal titers even though she's had strep 4 times this year and she does have PANDAS. I would recommend finding a doctor in your area who believes in and knows a lot about PANDAS. This can be a problem though, depending on where you live.

 

Dr. Cunningham's test I consider to be a must have and very helpful although you may still have trouble finding a doctor who will know what to do with the information. Where do you live?

 

Susan

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Everyone elses suggestions are good. Just to add...

 

I would start off with a throat culture. Too many docs want to just run ASO/anti-dnase B but don't bother with a simple throat culture (insist on the 48 hour culture if the rapid is neg). When we first learned about PANDAS (2mo. after fever/ our dd's behavior changed) a psychiatrist recommended ASO but not the culture. Luckily we insisted on the throat culture which was POSITIVE. We also did a perineal culture (I noticed blood in the urine) which was also POSITIVE. We cultured the rest of the family (2 adults, 1 younger sister). Sister was also POSITIVE (no symptoms, a carrier we assumed). The ASO/anti-dnase b however, were low/normal. If we hadn't run the cultures and only done the titers, nobody would have ever believed she was PANDAS. We also found that eliminating sister's carrier state was key to our pandas dd's recovery.

 

Unfortunately, there is no commercially available diagnostic "test" for PANDAS. Cultures, ASO, symptoms, history, response to antibiotics, response to steroids, are all pieces of the puzzle that will lead us to this diagnosis. Some cases are more clear cut than others. The Cunningham test is great but it is still in development. My understanding is that is this point, Dr. Cunningham doesn't want to use it as a diagnostic test (yet)....rather she is testing confirmed PANDAS cases for her study (which may be coming to an end soon due to lack of financial support.)

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