Missed Diagnosis/Cunningham Test

[Joan Pandas Mom]

My 15 1/2 yr old son has had PANDAS since he was 9 but only on the right diagnosis since October 2009. About 2 1/2 months ago a local Neurologist asked me if a diagnosis was missed, Syndenham's Chorea. Two days ago, I found a video tape of when my son started having symptoms "overnight". He clearly had Syndenham's. He had the piano playing fingers occasionally, constant movement, little dancing, facial gimmicking, looked like he just wasn't there. I e-mailed Dr. T. He said he wasn't surprised and asked if he has had the Cunningham Test and an echo. I am waiting for the hospital to call me back with the echo appt. What is the Cunninghams Test? Also, what is the CAM Kinase? Are IVIG effective with Syndenham's too?

[thereishope]

Taken from the FAQ sheet..

 

http://www.latitudes.org/forums/index.php?showtopic=6266

 

 

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.

 

 

This is a research study. However, it has lost funding and therefore there is fee to run the test. Last I heard it was $400. The ideal is to have this test done during an exacerbation, prior to a steroid burst to get the most accurate results. Here is her email if you would like to request a kit to be sent to you for the test. You would have to send the blood back to her to have the test run in her lab. She would then forward you the results.

 

Madeleine-Cunningham@ouhsc.edu

[Joan Pandas Mom]

Thanks Vickie. I'll look into it further.

 

Taken from the FAQ sheet..

 

http://www.latitudes.org/forums/index.php?showtopic=6266

 

 

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.

 

 

This is a research study. However, it has lost funding and therefore there is fee to run the test. Last I heard it was $400. The ideal is to have this test done during an exacerbation, prior to a steroid burst to get the most accurate results. Here is her email if you would like to request a kit to be sent to you for the test. You would have to send the blood back to her to have the test run in her lab. She would then forward you the results.

 

Madeleine-Cunningham@ouhsc.edu