how to get tested

[dana b]

i'm sure this has been asked over and over. i've been reading for hours and i'm still not sure how to go about it. my dd developed a tic in early june - she had a cold (her brother had chicken pox) and the cough from her cold turned into a tic. this has been going on for 3 months - non-stop coughing. my dh has had super mild tics in the past, one of his brothers has severe tics. my daughter's behavior has also been "off" since the tic started, she's been having a lot of meltdowns and screaming fits. my plan is to mention pandas to our ped (there was a lot of strep going around her class last year) and ask him about testing. i'm thinking that he may not even know about it and won't be supportive of any testing. if that's the case, who do i go to from there? a naturopath? a dan doctor? i have no clue. if our ped is interested in testing, but just isn't sure what the test is (this has happened in the past), what do i tell him? is it just testing for strep titers? thanks in advance!

[EAMom]

Have you seen this thread of FAQ's? http://www.latitudes.org/forums/index.php?showtopic=6266

 

Also, here is a brief fact sheet http://www.latitudes.org/forums/index.php?showtopic=6265 and flowchart http://www.latitudes.org/forums/index.php?showtopic=6688.

 

A easy place to start is to get throat cultures on all family members (including suspected PANDAS children and adults)to rule out "carriers"/assymptomatic strep. If those are neg (strep can hide out in other places that aren't easily cultured), some find ASO/anti-dnase b titers to be helpful (note: these are often low in PANDAS kids, esp. girls, so low titers don't rule out PANDAS/pitands.) Eventually, a "Cunningham test" (Cam kinase ll, anti-neural antibodies) may be helpful as well.

 

Many pandas kids do find some symptomatic relief with Advil (ibuprofen) so that is something to try at home. The change might not be dramatic, but mood might improve (tics seem more resistant).

 

Unfortunately, there is no "easy" diagnositc test for PANDAS (although the Cunnigham test may be a the closest thing we have so far). History, symptoms, response to antibiotics (and other treatments, advil, pred), cultures, titers, are all "pieces of the puzzle".

 

If you post where you live, maybe someone can rec. a doc.

[dana b]

thank you! that was helpful. i'm in pasadena, calif.

[EAMom]

Here's a list of docs by state http://www.latitudes.org/forums/index.php?showtopic=6428

 

I think Dr. Lin (in S. Cal) is supposed to be pretty good. Also, Priscilla is in S. Cal...so you might try pm'ing her for doc info. as well.

 

You could also make a separate post asking for doc recommendations in S. Cal.

Edited August 28, 2010 by EAMom

[pathfinder]

Dr. Gerald Greene at Beaver Medical group in Highland did all the blood tests for my son and he was covered by my insurance (Anthem)

Dr. Lin runs 2 different practices in the same office, one as DAN Dr. and the other as regular Pediatric. I had to make 2nd appointment to talk to him about pandas and it was not covered by insurance( $350 for first consultation/I do not know if blood tests are covered either). In the end, it was necessary for us to see Dr. Lin as for higher dose IVIG but Dr. Greene might be a good starting point. We like both doctors very much. Priscilla has S. Cal pandas support group so it might be a good idea to contact her.

Diamond Bar, Pathfinder

[dana b]

just checking to see if anyone's been to dr. mullan in burbank?

[momaine]

Initially ASO and Anti-dnase would be the first to check as well as a throat culture and an inspection of the nasal cavity by someone experienced in identifying sinus infections. My dd's ASO and anti-dnase were in the normal range, though. What she did fail was a pneumococcal antibody panel and her C3d (circulating immune complex) was highly elevated which indicates and autoimmune process going on. She was also tested for a million other things that I can't come up with off the top of my head but one was mycoplasma pneumonia.

 

Good luck.

[EAMom]

FYI...I don't know if you saw the survey that Buster did where he found that PANDAS girls were MUCH less likely to have elevated ASO/anti-dnase b vs. PANDAS boys. So, something to be aware of if you have a girl!