Cunningham tests/ Study

[Healingthedude]

Would IVIG skew results of Cunningham tests?

 

What exactly will these tests tell you about your child and PANDAS?

 

Do you feel they are worth doing? (you have to pay out of pocket-correct?)

[EAMom]

Would IVIG skew results of Cunningham tests?

 

What exactly will these tests tell you about your child and PANDAS?

 

Do you feel they are worth doing? (you have to pay out of pocket-correct?)

 

1) yes, it should lower it (at least high dose IVIG, not sure about low dose IVIG). If you are re-testing to see if CaM is lowered ( to confirm progress/remission.) with IVIG treatment they also rec. waiting a certain period of time (forget how long, 3mo.?) after IVIG.

Steroids will also lower the values. Antibiotics won't.

2) yes, for most folks. Good at "confirming" PANDAS and also good at differentiating PANDAS from non-PANDAS tourettes. For us it was enough "evidence" (nice to see since we had low strep titers) for our local non-pandas expert immunologist to okay IVIG (since he knew and respected Dr. Cunnningham). Without the test we would have had to fly out of state (from CA to Chicago) for treatment.

3) yes, you have to pay out of pocket, although I believe the $400 is tax deductable (charitable contribution)

 

More info. from the FAQ thread:

Tests: Antineuronal Antibodies Tests

 

Q: What are Cunningham tests?

A: Kirvan and Cunningham have been studying specific antibodies to GABHS. Cunningham has an open trial where she is recruiting patients to investigate the relationship between these antibodies and PANDAS symptoms. Many parents on this forum have participated in the study. These studies are still research studies and are not yet diagnostic for PANDAS -- but we're all hopeful they might be soon.

 

Q: What are CaM Kinase II tests?

A: These tests are also known as Cunningham tests on this forum (see above). In 2006, Kirvan and Cunningham found that specific antibodies to GABHS in the blood serum of PANDAS and Sydenham Chorea patients interacted with neuronal tissue causing a reaction known as CaM Kinase II activation. CaM Kinase II is part of a series of reactions that lead to dopamine release by neuronal cells. The activation of CaM Kinase II by an antibody indicates that if the antibody can cross the blood-brain barrier, it could interfere with dopamine regulation potentially causing a form of dystonia. It is important, however, to highlight that this is a research trial and the accuracy, specificity and repeatability of the test is not yet known.

Edited October 12, 2010 by EAMom

[purple66p]

I've been trying to understand these tests better, so thanks for starting the thread. Regarding EAMom's post, does anyone know:

1. The specific antibodies to GABHS: are these ASO and A-DNAS B?

2. Are the tests, described in Dr. Cunningham's letter to me "We measure the levels of antibodies against the neural antigens lysoganglioside, tubulin and dopamine receptors D1 and D2." associated with Strep only like the ASO and A-DNAS B?

3. Is CaM Kinase II activation only associated with Strep, or can it be from other causes?

[peglem]

I've been trying to understand these tests better, so thanks for starting the thread. Regarding EAMom's post, does anyone know:

1. The specific antibodies to GABHS: are these ASO and A-DNAS B?

Cunningham does not use ASO and AntiDnase B- these are antibodies to strep exotoxins, not strep itself.

 

2. Are the tests, described in Dr. Cunningham's letter to me "We measure the levels of antibodies against the neural antigens lysoganglioside, tubulin and dopamine receptors D1 and D2." associated with Strep only like the ASO and A-DNAS B?

I think these are antibodies to the M protein component of GABHS, but you should ask Dr. Cunningham.

 

 

3. Is CaM Kinase II activation only associated with Strep, or can it be from other causes?

It appears that there are nonstrep triggers for elevated CamKII, I think Lyme is one possibility, but I don't think other triggers have been studied.

Edited October 12, 2010 by peglem

[thereishope]

This is the thread from P.Mom's visit to Dr Cunningham. It's something worth reading

http://www.latitudes.org/forums/index.php?showtopic=9361&st=0&p=78479&fromsearch=1entry78479

 

Also, if you do the test post IVIG, make sure you mention this to Dr Cunningham.

[amyjoy]

I believe there is leniency in the payment for the cunningham tests, as she received a grant. They ask for a donation but its ok if you cannot pay anything.

[thereishope]

If you are referring to the Pepsi grant money, that was not used in adjusting payments for the tests to be run. Payments and amounts may have varied over the last year or so, but I believe the current charge is $400. As for it being optional for those who cannot pay...I haven't heard anything about that for current. I would clarify that with the office.

 

Finally, it was mentioned on here that Dr Cunningham's office had to hault sending out kits for the time being do to revising paperwork that is sent out with the kit and being bogged down with tests to run. Again, contact the office first and get details straight from them:)

Edited October 13, 2010 by Vickie

[amyjoy]

If you are referring to the Pepsi grant money, that was not used in adjusting payments for the tests to be run. Payments and amounts may have varied over the last year or so, but I believe the current charge is $400. As for it being optional for those who cannot pay...I haven't heard anything about that for current. I would clarify that with the office.

 

Finally, it was mentioned on here that Dr Cunningham's office had to hault sending out kits for the time being do to revising paperwork that is sent out with the kit and being bogged down with tests to run. Again, contact the office first and get details straight from them:)

 

Hi Vicki

 

I could be wrong (wouldn't be the first time:) ) and i thought DP told me that cunningham's lab was getting some NIH funds? Also, the last couple of kits I gave out from my office, from the most recent batch that Kathy Alvarez had sent me, had different paperwork that asked for donation but not payment exactly, it looked different. Also one of the moms had spoken with Kathy and her impression was also that it was donation now, not payment.

Anyway i guess i could have misunderstood all of this, but, i think i'll email Kathy just to be sure one way or another, how about that? and then i'll post the info.