How to test For PANDAS

[peglem]

The titers tests, if they come back elevated only indicate that there was a recent strep infection- w/in the last 6 or so months. If titers come back low, it doesn't mean anything, does not rule out recent or current infection...it just means that the immune system has not been generating high numbers of those titers. I know its frustrating that there is not an easy way to get the information you want...there just isn't. These tests can confirm, but not rule out. My daughter had numerous positive rapid strep tests, but no elevated titers...and that is the case with several others on this board. Unfortunately when this happens, doctors frequently rule out PANDAS based on the low titers...

 

Is the blood test able to indicate whether the child has ever had strep at any time in their lives, even if the child tests negative or is asymptomatic?

No, because its very unusual for people to have zero titers- pretty much everyone is frequently exposed to strep- its a very common pathogen.

[szcasey]

Hi Tigger,

 

I'm also relatively new to PANDAS. I believe half the battle is finding a doctor who understands, believes it exists, and can treat it. Based on what I've read and experienced, a lot of MDs don't believe it exists. I also learned about PANDAS by reading "Saving Sammy..." I went back through our records and my 7 yo son fits it to a "T."

 

My two cents... contact Beth Maloney (via savingsammy.net)...she's very responsive, sweet and helpful... she also has a public FB profile with a list of MDs by state who treat PANDAS as well as a wealth of other info. I swear, I do not personally know her... I only know her through email contact... I've emailed her once with a ton of questions and she promptly responded. She's amazing!

 

I'm still trying read all the posts here... there are many helpful people and MDs on this list!!

 

Good luck and keep in touch,

Sarah

[Buster]

So, starting with the 1st box, after finding out what GHBAS is, it looks likes the first step is to have the family members throat cultured for Strep.

Well, actually, you want to check whether the clinical symptoms are consistent with the symptoms of PANDAS. For example, did your child have daytime urinary frequency? Were the symptoms sudden onset? etc.

 

Then, yes, you would want to check whether the family members have strep. The main reason is that strep does tend to ping-pong in a family. It's an easy test although important to be done by someone who knows how to take a throat culture. You can certainly just start with your potential PANDAS child, but at least in our case, other family members were good indicators that we had strep in the house.

 

Am I reading this right? My reasoning for wanting to go directly to the the blood test (the one which will show a titer number) is because I don't think any of us will test positive for strep because we are not displaying any symptoms.

The ASO blood test has only a 46% accuracy and then only when taken within 1-4 weeks of a likely strep infection. Outside of that window, its value is limited.

Neither one of my kids have ever had strep throat to my knowledge.

Strangely that's even a stronger reason to have them checked. Most kids of school age get strep once every two years.

I am worried that tests would come back negative, and paranoid that all offers of further testing would stop there.

That's a really reasonable concern and a reason some people get either a home strep test or go to a clinic. You can certainly get all of them at once. The real problem is that most doctors think the ASO is definitive -- it's not. In addition, most doctors don't know you have to check titer direction (meaning two draws). Further most doctors don't know the timing interval for ASO and AntiDNAseB (sigh, makes you wonder what they learn in school).

I had read that even the titers show up low and docs may discard the possible PANDAS diagnosis.

You are absolutely correct and if the doctor isn't well informed, that's exactly what they'll do.

Am I reading all this right, is my plan to start with the blood test a good one, along with getting everyone throat cultured for strep?

Yes, you can execute the tests as a group and that is often better since they have different time windows. However, don't let a doctor tell you that a negative ASO overrides a positive throat culture!

[EAMom]

Tigger and Lilyma....

we also have our own dr. list http://www.latitudes.org/forums/index.php?showtopic=6428

 

Also, if you post where you live we sometimes folks will offer recommendations.