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Have you done or would you do the Cunningham Panel?


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Have you done or would you do the Cunningham Panel? Anyone get a normal/non-PANDAS result? My husband and I just decided we should get it done to rule PANDAS in our out for our 3.5 year old, but I am really scared of a false negative result.

 

If you did decide to do the Cunningham Panel and got a normal result would you rule PANDAS out?

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I live in MA and I don't believe the test is authorized in my state if I'm not mistaken. I wouldn't do it for my two kids personally due to four other reasons as well. 1- we had documented cases of strep in our house that were around the time the symptoms began. 2- our doctors believe that is what they have so I don't feel I need that tangible proof. 3- they have both responded to antibiotics dramatically, even if they are back to baseline yet. 4- cost is a huge factor.we pay a fortune each month for health insurance plus have a large deductible. Anything we spend money on has to be put to a direct treatment or cure, especially if its uncovered and doesn't apply to my deductible.

 

But if two or more of those five factors were not in place I would feel very differently. I also think the child has to be in an active flare to test positive which means a neg is not always an end all answer.

 

It's a tough choice but I think for most people its becomes quite clear if they feel the info would be helpful to proceed.

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I thinks it really depends on the situation. If I had a child with a documented, direct strep link and a doctor willing to diagnose, I'd save my money for treatment.

 

My son was in the Cunningham study. It cost me $400. My son has never had a documented case of strep. He's never shown elevated titers to anything but anaplasma and ehrlichia but at that time, we did not test for Lyme and coinfections, just strep and mycoplasma and some other things Dr T was doing at that time in 2010. We have basically few to no options in my state for providers who will treat. It cemented in my mind and my husbands that my son had PANDAS. We now know he actually is PANS. His Cunningham showed elevated CamK 2 and one anti neuronal elevation.

 

That said, neither Dr T nor Dr K required the Cunningham for a definitive diagnosis. It's more helpful locally. Still doesn't get us local treatment though.

Edited by nicklemama
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We don't feel the need to do it but we have been at this for several years and have several docs on board with us. Plus there is an obvious cause-effect with Strep in our kiddo. I think it is a personal choice. However, I would caution you to be careful in sharing it with non-PANDAS docs. I believe that it is meant as a tool for clinical diagnosis. If it comes out negative, that does not necessarily fully rule out PANDAS/PANS. I fear that some medical professionals will misinterpret it as "proof" that some kiddos do NOT have PANDAS/PANS if it is neg., and those kids may fall thru the cracks.

Edited by Beeskneesmommy
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a long time ago, in the beginning of pandas onset, we saw a naturopathic doctor. she once told me that early in her practice, she ran a lot of tests and it was great to have lots of data. now, she only runs tests that will influence how she will treat the patient.

so -- what do you plan to do with the results? that's what i'd suggest to guide your decision. think about really what you will do if you get a positive or negative response. try not to have the fear guide you -- but the reality of what you would do.

 

just fyi - we have never done Cunningham test. I would love to see what it shows. ds had onset 4.5 years ago. he had high titers, positive throat culture and 100% remission with abx. at the time, I didn't feel it would show me anything I didn't already know. we do have doc's letters with pandas diagnosis for school. I don't know what more we have to gain from it -- but i'd still LOVE to see what it shows! especially if we could do it in remission and exacerbation.

 

just have to be more prudent with our $ -- perhaps when I win the lottery. ;)

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We did the Cunningham Study shortly after our ped positively dx PANDAS in our ds (2009). It was not necessary for treatment, our ped was fully on board and was already treating PANDAS in his practice, but was frankly more to satisfy my need for hard clinical data and to further educate myself on what we were facing. Our ds tested exactly as he presented; def PANDAS as summarized by Cunningham, but CAM K on the low end of PANDAS range, despite very high ASO titers (~800). Ds's symptoms have always been relatively mild compared to what I've heard from the families on this board. However, for us at the time they were quite alarming. Cunningham's results seemed to confirm where we stood compared to the PANDAS population.

I'm glad we did it, it was another metric we could point to if needed and I'm pretty sure we caught him close to baseline as we tested within months of his sudden onset.

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It's a new test. At some point I can see all the doctors and patients that are considering IVIG requiring it. Dr K devised his own test- give your kids steroids to see if they react to halting the immune response. I'd much rather give them a test to se if their immune system is creating high amounts of autoantibodies, then giving them a powerful drug.

 

Not everybody has PANS and pandas that have the symptoms, and strep is so incredibly common, it's found in a very high percentage of normal, non sick, non pandas kids when studies have been done of large communities. A strep titer is not a very specific measure of anything. Something like 20 percent of the kids in any classroom will throat culture positive for strep in the winter months.

 

The test can tell you if your child will very likely respond to IVIG (and steroids). And possibly other immune modulating treatments. It also like a screening test for infection. If your child is high, and has not had strep- start looking, because they probably have another infection and or low immune response, and than needs to be addressed, in addition to any pandas treatment.

 

Even if your child had strep- strep s SOOO common- it does not mean they don't also have an underlying infection or immune issue. I'm of the opinion that they probably do. We need to move beyond looking at just strep. Look at the immune system, like all the other autoimmune diseases.

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We did it at Dr. T's suggestion. I think it was in the fall of 2010. It was $400. There really wasn't much doubt at that point that she had, at minimum, Pandas.

Her levels clearly showed Pandas.

I think the one positive thing about it was that her regular doctor (family doctor also) finally acknowledged that she wasn't actually crazy. I gave her a copy of the results with the accompanying literature they sent, and it was like an instant turnaround.

She has watched her like a hawk ever since.

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It's a new test. At some point I can see all the doctors and patients that are considering IVIG requiring it. Dr K devised his own test- give your kids steroids to see if they react to halting the immune response. I'd much rather give them a test to se if their immune system is creating high amounts of autoantibodies, then giving them a powerful drug.

 

Not everybody has PANS and pandas that have the symptoms, and strep is so incredibly common, it's found in a very high percentage of normal, non sick, non pandas kids when studies have been done of large communities. A strep titer is not a very specific measure of anything. Something like 20 percent of the kids in any classroom will throat culture positive for strep in the winter months.

 

The test can tell you if your child will very likely respond to IVIG (and steroids). And possibly other immune modulating treatments. It also like a screening test for infection. If your child is high, and has not had strep- start looking, because they probably have another infection and or low immune response, and than needs to be addressed, in addition to any pandas treatment.

 

Even if your child had strep- strep s SOOO common- it does not mean they don't also have an underlying infection or immune issue. I'm of the opinion that they probably do. We need to move beyond looking at just strep. Look at the immune system, like all the other autoimmune diseases.

I think we chased strep for years and my daughter was almost always + for strep, so we thought that was what her problem was. It may have partly been that, but abx like ammoxicillan which is supposed to treat strep didn't work at all. When we went to the stronger abx (rifampin was particularly helpful) we saw improvement. We finally have found mycoP and I wonder if that was the real problem all along- it got treated sometimes w/ what we were using for strep. So did strep play a role, or was it just a red herring? IDK, but I wish we'd looked for more stuff sooner.

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We did it over three years ago when it was in the study phase and it was the best $400 we ever spent. It gave us the ammunition to get long term antibiotics from our pediatrician (or at least enough to tie us over until we got to see a PANDAS specialist). It helped us make the decision about which medical path to follow for treatment (i.e. abx vs SSRIs) because therapy alone was clearly not working. And over those three years, when I would sometimes question whether we were on the right path, I would remember that test and say "yes."

 

It is available in Massachusetts now, too.

 

Kara

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We are not going to do it any time soon for several reasons:

 

1. Kiddo has a very clear presentation. She had confirmed strep for almost 60 days at diagnosis, and she had all 15 of the symptoms of PANDAS at the time of diagnosis. She has responded within 20 days to abx therapy, almost instantly to IBU, and when we had to, within days to steroids.

 

2. The cost of $1000.00 is out of our reach right now since we have sooooo many other more important tests we are still running, supplements we are adding on still based her latest lab results and 23andme results, and her meds are still in flux since we are still finding more co-infections or high contributing antibodies.

 

3. I have requested twice from the lab the CPT codes and unit values they are billing under so I can find out if kiddos insurance will cover any of it and if so, how much. They have yet to even acknowledge I have contacted them, let alone supplied the information I need to decide if we can afford the test.

Edited by Mayzoo
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We did the test (when it was $400) because I wanted to know if it was indeed PANS, or 'just' autism spectrum disorder.

We were working with a DAN! (Defeat Autism Now) Dr. at the time....and he treated our PANS part-

(first runs of antibiotics, then 2 IVIG's).

We had done some gut healing and chelation before we found PANS.

Then, found Lyme and co.

Long road $$$

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We did it when it was in the research phase, and it was very, very helpful...especially for my older DS who we thought had Asperger's, but then had a major psychiatric problem. Both my kids were very positive...CamK II, ANA, dopamine 1 and 2, and the other one (can't remember what it tested.) Very well spent money. I do realize it is now $1000, which I feel is exceptionally high. My understanding is that it not only shows if CamK II is responding to strep, but can also be responding to other infections (you may want to contact Dr. C, who is the CMO at Moleculara Labs) about that.

 

I would say that if you need it to prove to docs, yourself, etc. that your child actually has PANS, and will, subsequently get tx, then i would definitely get it. Really depends on why you are getting the test done.

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We did it as part of the study as well. Our biggest reason was because our son had no history with strep, excepting a possible case when he was 6, but his case was similar to the PANDAS kids I read about on here. It confirmed for us that he was a PANS kid & that it was indeed worth our time & $ to initiate this medical journey. Shortly thereafter, we discovered he was positive for Lyme (after almost blowing off the test to save money because we were considered such a low risk for it - even our PANDAS doc was surprised).

 

It has pretty much saved our son's life, but if he had a known history with strep as you say your son does, I seriously doubt we would have bothered spending the money as that would virtually eliminate the uncertainty our family was dealing with when we first learned about PANS.

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