Cunningham Panel - Who's used it? (Moleculara Labs)

[MissionMama]

I am interested in getting feedback from those of you that have had/or considered having this panel run for your children.

 

1) Actual turnaround time (they say 6weeks)?

 

2) what did the result "rating" come back as (Unlikely, Likely, Highly Likely)?

 

4) if tested, was your child taking abx?

 

3) if you decided not to do it, why?

 

Thank you so very much.

 

Kristi (on a ) MissionMama

[Mayzoo]

We opted to not do this test. Kiddo was text book PANDAS, and we had already done about 5000.00 worth of other testing for co-infections. We could not justify another 1000.00 for a test that would only tell us what we and the doctor already accepted as fact.

 

I can see needing the test when the case is not as clear cut as our kiddo was, if you have doubts, or if you are still fighting with a doctor.

[tpotter]

Both my children were part of the clinical trial (we still had to pay for each.) It was very well worth it for us, because we needed more verification. It really depends how much verification you need in order to get treatment. It does tell you more than just whether or not it is strep related. It tests for an autoimmune response, dopamine reactions, and cam kinase levels (which are not only affected by strep, btw.) My boys were extremely high in all areas. Yes, by guys were taking abx at the time. Both ended up also having lyme and bartonella, and one also had erlichiosis and babesia (although the other might have those, too...just not as clearcut.) BTW, interestingly, cam kinase II levels have also been found to be high in people with Alzheimer's. I asked the Alzheimer's Foundation if they are looking into a correlation with infection, and they did tell me that research has been funded. So, I really think there is clinical relevance to so much...not just PANS.

[LNN]

Both my kids had it done when it was a research study (which was expensive back then, but nothing compared to what it is now!).

Can't speak to turn around time.

 

Both their results came back "highly likely" yet DS ended up having lyme+Pandas and DD's "cure" came from treating methylayion, not from abx. So "Pandas" was only part of the problem.

 

They were both on abx when we did the test.

 

Was it helpful? At the time, yes. It made me feel less crazy and helped me approach doctors and the school with confidence. But it didn't end up being the final answer for us. We still needed to go on and test for lyme, test for a zillion other things. It's a huge amount of money and if I were faced with the same decision now, I'd put the money toward doctors and treatment. If the test were half the price it is, I might have a different opinion. Is it helpful? Yes. Is it $900 helpful? It depends on your financial situation, but for me, no, it's not where I'd invest my funds.

[oivay]

We did the Cunningham test, back when it was $400. I believe she was on antibiotics at the time. We had to wait over a month to do it as she had been on massive doses of prednisone before that, and prednisone can mute the results. We did it based on Dr. T's suggestion at the time. Her regular doctor drew the blood and sent it off to Oklahoma.

 

It did take quite a while for the results to come back. We did the test in October, and if I remember correctly, we got the results in December. This was a few years ago.

The results showed Pandas, and while she did have some Pandas symptoms, chorea was much, much worse.

 

I do think it was worthwhile to do. I gave her regular GP a copy of the results, and the accompanying literature they sent with them, and she did a complete turnaround after that. (She was a bit of a Pandas naysayer before that.)

 

I think it helped in the sense that we had created a paper trail, with all of her test results, abx usage, strep titers, strep results, etc. I believe all of the documentation helped her to ultimately get plasmapharesis, which was tremendously helpful.

[TinyTreasures]

We did the Cunningham Panel recently in August. It took exactly 8 weeks on the dot to get our results back. They came back just below the middle range for "Likely". At the time he was tested, his mood and behavior were wonderful, NO WHERE NEAR their worst, but his tics were very bad. All other levels were either right at the bottom of normal or BELOW normal which was also helpful to know. He was taking antibiotics at the time. I am VERY glad we decided to do it, because up until then we had been second guessing everything constantly. Finally we had an answer and it is a relief to be able to tell people and Doctors that he does indeed have an autoimmune disorder, not just that he was diagnosed but we aren't positive. Hope this helps!

[nicklemama]

We did it when it was a research study. It's hard to exactly compare her ratings system then and now but he was likely and I spoke to Dr Cunningham personally. My son had no infections pop up on Dr T's testing (not nearly as comprehensive as it is now) so it was validating to me. Ask yourself why you are perusing it. Is it for you or is it to help get medical care. It's a lot of money and I'd have a clear medical reason for doing so.

Edited November 14, 2013 by nicklemama

[T_Anna]

We did it after DS had two IVIGs and we wanted to make sure we knew what we were dealing with.

 

Took a month to get results, after I write a few letters and doctor called to urge an expedite.

 

Results: highly likely

 

We used it to pursued PEX.

 

He was on abx.

[JoyBop]

Dr. Cunningham said at the conference that results are taking 6 weeks or more, not due to how long it takes to run the test, but because there is only one part time person running the tests and the high volume they are receiving. Its a funding issue and she hopes things are able to change soon.