Cunningham Test

[becjonz]

My son was diagnosed with PANDAS through elevated titers but I'm always curious when I see posts about Cunningham test. I like the idea of his data being added to the research since I figure the more info the better BUT $400 is a lot right now so I have two questions...

 

1. Would you recommend or do you see a benefit to having the test done even if we don't need it for diagnosis?

 

2. What is the likelihood of the test being free again once they receive the PEPSI refresh money? (feel guilty asking but if it was a matter of waiting a month or two...)

[tpotter]

Honestly, if you don't need it for dx, I wouldn't bother. She has plenty of kids with samples. Most of us do it, because we need the dx. I even did it twice on my older son, because even after one round of PEX, which went well, 6 months later, Dr. L. thought he might have something else. I chose to contact Dr. C. again, and repeat the test...it was positive. I also had my younger son's blood drawn, and am freezing it. I would have sent it in at that time, but he was supposed to have a second round of PEX at that time (problems at Gtown kept him from getting it at that time. I'll send it in later, but that's for her records, since I want to help her with followup information (and it helps us to know.)

[Phasmid]

I did it only to provide substantiating evidence to his pediatrician, who said he would be interested to see the data, which he wasn't after all, and to provide supportive information to his PANDAS docs, who said it wasn't that important and wouldn't change treatment anyway.

 

So, worth it? I dunno, especially when nobody can offer scientific or clinical interpretation of the results. I would say wait until Cunningham publishes some data in a peer reviewed journal.

[Kay]

We did it because we didn't have high titers on strep. By the time we got around to thinking Pandas many years had passed and blood work only showed high igg on Mycoplasma P. So Cunningham test kind of just gave us information we were looking for to show doctors and helped to show us there was really something happening with my daughter.