Has anyone repeated the Cunningham Panel on their child?

[ktdommer]

My son had some PANS improvement after 6 rounds of IVIG and Lyme treatment.

 

I'm now wondering what is bartonella and what could be Ehlers- Danlos/Chiari and what mood symptoms could be normal.

 

Has anyone had this test repeated years later? What were differences? Was it worth it?

 

Is the Cunningham testing doing anything new? Testing new areas?

 

Kari

[bobh]

Because of its expense (and we are in Canada - it was more difficult to get it for a while), we never did it even once. My own argument was that the specialists that we had easiest access to understood and were willing to recognize PANS without requiring the panel, and the panel wouldn't have convinced the other doctors that didn't believe in PANDAS/PANS. Don't mean to knock the Cunningham panel - I would love to have it, its just the circumstances.

 

I am thinking that very few get the Cunningham panel twice, but the most likely group (besides the rich) might be some of the hundreds of people that they did for free (in one of the studies that used Cunningham panel tests). You might get somewhere with your question if you asked them directly if anyone had it twice, and whether anyone felt it was worth it. Their bias might be that "yes it was", but with a few good questions ("what did the 2nd panel cause them to do that they wouldn't have done otherwise"), you might be able to find out if it really was worth it.

 

I do believe they were thinking of expanding it at one point, but haven't checked back as to whether they ever did. Were your results strong and conclusive?

[4Nikki]

Our DD had all the clinical symptoms of pandas/pans. Evey doctor she has seen concluded that her symptoms were pathological and not behavioural. She was diagnosed in her 4th month by her PCP as having an unknown autoimmune illness. We didn't care what the doctors called her illness as long as that could treat it/manage it. Along with the diagnosis comes insurance and/or social services funds. We moved from southern California to Washington state in 2013 almost 2 years after the onset with no pandas diagnosis. Dd's diagnosis of pandas came from her physiatrist at Seattle childrens he ordered the Cunningham panel as a confirmation of the diagnosis so he could refer us to a pandas specialist. The Cunningham panel to diagnose pandas/pans provides evidence for the more expensive ivig and plasmapheresis treatments which can be used in part to get insurance to pay the bill. The majority of the plethora of blood tests ordered by various doctors to find the causes of dd's symptoms, be it positive and negative got us nowhere toward being able to manage dd's symptoms. The history of tests does help rule out many co-ailments. A second panel would not do us much good, unless DD's symptoms changed. We know that dd needs mitochondrial support and her neurologist is ordering a mitochondrial panel so that we can adjust the supplements according. Without the Cunningham panel, we wouldn't be where we are today in managing and treating dd's symptoms. Her pandas specialist has helped us tremendously reducing the intensity of DD's symptoms.

[Rachel]

My son was treated with plasma exchange and his doctor did not recommend a retest with the Cunningham Panel. My son finished his treatment in July 2015 and has had no strep infections since. However, his doctor is checking for strep antibodies through ASO testing.