Have you done or would you do the Cunningham Panel?

[lfran]

So you repeat the test after steroids or ivig?

[TinyTreasures]

Mayzoo - I called the lab last week to request the insurance codes. Here is what he told me:

 

83520 - 4 times
88230 - 1 time
86352 - 1 time

 

My insurance is BCBS and they only (maybe, depending on what reason the lab gives for it) will cover the 88230 code, but we will still submit it with our fingers crossed.

 

 

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.

[EAMom]

In one of the radiopandas episodes, they did say that the test could be used to monitor response to therapy. http://www.blogtalkradio.com/radiopandas

The Cunningham test does get around the naysayer's that claim strep is so common (you know, Kurlan's pizza analogy) that any correlation with strep and behavior change is just coincidental.

Have people that had been running the test had success with insurance paying for some (or all) of it?

We did do the test a few times (when it was $400 and you could also write it off as a charitable deduction to Univ. of Oklahoma). Her highest CaMkinase ll was after getting H1N1, it was 253% (high SC range). Prior to that, when not in an exacerbation (but before steroids or IVIG) she was in the high PANDAS range (183%). Her values did convince our immunologist (at the time) to okay IVIG locally. Otherwise we would have had to travel to Chicago (from CA) for IVIG with Dr. K (this was in 2009).

Her anti-D1 was consistently VERY high, up to 16,000 when normal was 500-2000 (high even after IVIG, when her camkinase ll went down).
Her anti-D2 was on the high side of normal.
Her anti-lysoganglioside and anti-tubulin were also high (sometimes high end of normal, mostly just high).

I think Dr. Cunningham said that anti-D1 was OCD related. I can't wait to re-run the test. It's been 2 years since her last IVIG. and 3 years since we last ran the test. Dd is overall better, but still has residual OCD. She doesn't want to "fight" the OCD (it's mainly doorway issue), so ERP/CBT isn't going to cut it for us anyway. If there are still a bunch evidence of anti-neuronal antibodies, that would to me suggest that we still need some sort of immunotherapy/medical treatment vs. "she just isn't trying, and needs therapy".

Edited June 23, 2013 by EAMom

[T_Anna]

We just received our results this past Tuesday. It was expensive, but we really wanted to be sure that we were on the right track.

 

T.Anna

DS

[Mayzoo]

 

Mayzoo - I called the lab last week to request the insurance codes. Here is what he told me:

 

83520 - 4 times

88230 - 1 time

86352 - 1 time

 

My insurance is BCBS and they only (maybe, depending on what reason the lab gives for it) will cover the 88230 code, but we will still submit it with our fingers crossed.

 

 

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.

 

Thank you very much for sharing this! I will call my kiddos insurance (BCBS also but probably a different state) to if they will cover any of it as well. I like to know in advance how much I am spending on a test prior to committing to it; if it is a non-critical test, I do not like surprises. Also we have already had over $5000.00 in lab tests run since April already that were critical tests and I am unsure how much my part is on those yet since the insurance requested records to prove they were medically necessary.

 

Our immuno shows zero doubt that she is a clear cut PANDAS case, and he is treating her as such without any reservations, so the test so far, is unnecessary and he is leaving it up to us to do or not do as we wish. He is offering IVIG based on her dx of PANDAS, and now she has the added dx of Primary Immunodeficiency, so IVIG would likely be covered up to some extent.

 

Thanks again.

[momcap]

We did it a couple of years ago. CamK II in high PANDAS range, and Anti-Dopamine 1 elevated. I'm VERY glad we did, because I personally needed the confirmation. I had been pushing back against my docs saying DS's behaviour was all psych and offering psychotrophic meds, but I was starting to doubt myself. Then this test came back and it was the first test we ran that came back abnormal (besides high ASOs which didn't convince the docs of anything). I finally had some evidence that there was something medically going on, and even though the local docs didn't understand the test or results, I feel like it they finally started to listen to me, and respect what I was saying. Also, an infectious diseases doc we saw along the way seemed to understand the study and told me DS's results confirmed an autoimmune process was affecting his brain. So that felt good to have a doc FINALLY back me up, even though he had no idea what to do about it.

[norcalmom]

We just did this test again. This was the 3rd time. First time, cam k 176, very high Lysoganglioside.(5x median), boarder line but normal D1 and D2. That was 3 years ago- and what I needed to see for me to be comfortable with flying halfway cross country to do IVIG. Second time, 4 mos post IVIG, camK 130, so very close to normal, most issues had resolved. 9 mos after that a couple of more severeve symptoms had returned, so we did another IVIG. Helpful, but not as impact full as first IVIG. No Cunningham's tests done then- I think lab was closed.

Fast toward a couple years, finding MycoP after 2nd IVIG possible Lyme and lots of antibiotics for that. His symptoms have changed a lot in the past year. No longer tics- prior to first IViG he looked like Tourette's. and he no longer has extreme exacerbation a with every sniffle(he would add 5 or 6 categories if symptoms bed wetting,,new OCD stuff, insomnia, nightmares, age regressions,etc) does not do that anymore.

BUT his major OCD thing and general irritability are just getting progressively worse. Some worsening with illness and stress, but nothing like before. So- I now need to ask myself if this is what we are left with after years if it, or is some immune issue- is he still making antibodies to his own brain, in which case I want him to have another IVIG. And if not- we might go to Florida for 3 week intensive CBT program- which I am dreading the pain that would cause entire family, but we are willing to try anything that might work.

Cam K was 215. Lysoganglioside -now normal ( and that is the antineronal linked to Tics, which makes sense) and D 1 was on the line for high, the exact cut off number. Other two in normal range. So I'm glad I did the test (and not the CBT- because I don't think it would work, and would have been very painful for him- and me since I am his trigger).

We are now pursuing another IVIG. This time will do the 2.0 dose, his previous 2 were at 1.5, and will do steroids for few days before/after due to extreme side effects he had last 2 times.

 

It looks like his mycoP is moving in the right direction. So wish us luck. I really hope that he's finally in a place where it will "stick", and he's also now been doing a much of immune regulating supplements based upon MTHFR mutations, really low D, and a couple other things, I hope will support him better.

Ideally I would have liked more time to see of the methylation stuff, immune regulation supplements, Vit d and just being MycoP free would be enough to turn it around, but I don't feel we have the luxury to wait and see.

 

But as far as this test goes- I think it's invaluable. If I could get results in a few days rather than 6 weeks, I would wait, to see if it was trending downward- same way I tracked his MycoP titer. Hopefully someday they will get to that point. For now, I'm just so glad it exists to help guide us. I think when Dr C publishes her next round if papers associated with these tests, more docs and more if us will be able to look at the numbers and see the value in the tests. The biggest fault they have at the moment is that her original studies had very small groups. But after years and thousands of tests later she opened the lab- so I'm betting her next papers will put an end to any arguments about these tests. I don't think she would open a lab if her years if data didn't support it.

[EAMom]

norcalmom--I tried to send a msg, but it says you can't get new messages. Maybe your in box is full.

Edited June 26, 2013 by EAMom

[norcalmom]

I deleted a bunch if stuff- and sent you a PM EAMom. I think it will work now- even though all the conversations are still there- they just say deleted next to them now...

Thanks for letting me know. I've not looked in there since site was redone.

[momofadult]

We just did this test again. This was the 3rd time. First time, cam k 176, very high Lysoganglioside.(5x median), boarder line but normal D1 and D2. That was 3 years ago- and what I needed to see for me to be comfortable with flying halfway cross country to do IVIG. Second time, 4 mos post IVIG, camK 130, so very close to normal, most issues had resolved. 9 mos after that a couple of more severeve symptoms had returned, so we did another IVIG. Helpful, but not as impact full as first IVIG. No Cunningham's tests done then- I think lab was closed.

Fast toward a couple years, finding MycoP after 2nd IVIG possible Lyme and lots of antibiotics for that. His symptoms have changed a lot in the past year. No longer tics- prior to first IViG he looked like Tourette's. and he no longer has extreme exacerbation a with every sniffle(he would add 5 or 6 categories if symptoms bed wetting,,new OCD stuff, insomnia, nightmares, age regressions,etc) does not do that anymore.

BUT his major OCD thing and general irritability are just getting progressively worse. Some worsening with illness and stress, but nothing like before. So- I now need to ask myself if this is what we are left with after years if it, or is some immune issue- is he still making antibodies to his own brain, in which case I want him to have another IVIG. And if not- we might go to Florida for 3 week intensive CBT program- which I am dreading the pain that would cause entire family, but we are willing to try anything that might work.

Cam K was 215. Lysoganglioside -now normal ( and that is the antineronal linked to Tics, which makes sense) and D 1 was on the line for high, the exact cut off number. Other two in normal range. So I'm glad I did the test (and not the CBT- because I don't think it would work, and would have been very painful for him- and me since I am his trigger).

We are now pursuing another IVIG. This time will do the 2.0 dose, his previous 2 were at 1.5, and will do steroids for few days before/after due to extreme side effects he had last 2 times.

 

It looks like his mycoP is moving in the right direction. So wish us luck. I really hope that he's finally in a place where it will "stick", and he's also now been doing a much of immune regulating supplements based upon MTHFR mutations, really low D, and a couple other things, I hope will support him better.

Ideally I would have liked more time to see of the methylation stuff, immune regulation supplements, Vit d and just being MycoP free would be enough to turn it around, but I don't feel we have the luxury to wait and see.

 

But as far as this test goes- I think it's invaluable. If I could get results in a few days rather than 6 weeks, I would wait, to see if it was trending downward- same way I tracked his MycoP titer. Hopefully someday they will get to that point. For now, I'm just so glad it exists to help guide us. I think when Dr C publishes her next round if papers associated with these tests, more docs and more if us will be able to look at the numbers and see the value in the tests. The biggest fault they have at the moment is that her original studies had very small groups. But after years and thousands of tests later she opened the lab- so I'm betting her next papers will put an end to any arguments about these tests. I don't think she would open a lab if her years if data didn't support it.

I, too, find myself thankful for the things that are better but still wish for it ALL to better. Hopefully the next round of IVIG will get him closer to his baseline. The test seems to not only have been helpful with diagnosis but helpful in objectively monitoring treatment response. The test may become the kind of measure that can eventually lead to the development of treatment protocols and make insurance reimbursement easier. BTW, we found glutamate modulating supplements and meds helpful with the irritability, OCD, and anxiety symptoms. The symptoms are improved, though not gone, so we are still working on them.

[EAMom]

Hi Norcalmom,

 

Do you know if is the scale for Cam Kinase ll the same with the current test? In other words, is 215 in the SC range (above PANDAS)?

[norcalmom]

They don't talk about SC in the results any more. They mention SC in a 3 page document explaining the disorder, but not the fact that the SC sera was found to be much higher.

They have a green( unlikely) yellow(likely ) and Red ( highly likely) bar chart - hard to see where the actual cut offs even are. But- for Cam K looked like 120-185 puts you in the likely zone, and above 185 in the highly likely- however- then there is a separate bar that has a combined "likely hood"- that combines all the anti neuronals and cam k- cam k is HIGHLy weighted. But for example, my son had one anti n at the high end of norm, and others elevated but closer to norm. Only his cam k was really high- and in the combined scale, he was still in the "highly likely" range. It looks like adjusted his ck down 5points or so.

[TinyTreasures]

Thanks everyone for your responses! So we have decided to order the Cunningham Panel for our 3.5 year old son. He was doing amazing on the Augmentin (after 50+ days of Keflex and Zithromax not working) but got a cold around day 30 and after it was over everything started coming back. Rages, fears (he can't walk under our smoke detectors by himself right now), aggression, tics way worse....

 

I can't believe it but my husband STILL can't see that something is very wrong...he does not believe this is PANS, he believes it is a behavioral thing and possibly Tourettes. He always forgets how our son used to be when he was "himself"...even though that was only a week ago! Fortunately he's agreed to do the Cunningham Panel so we can know once and for all.

 

My question is - we won't be able to do it for 7 days - hoping it will arrive in time to our Neurologist's office for us to do it there at our follow up appointment on the 15th. Our son has been so unpredictable in the past, going from horrible and then back to normal out of the blue. This morning was absolutely horrible, then after Ibuprofen he didn't have a single tantrum. But by nighttime when the Ibuprofen should have worn off he was still mostly back to his sweet self.

 

I want to be sure we do the Cunningham Panel at the right time, I am so scared of a false negative. If he is doing well in 7 days should we wait on it until another flare?

[nicklemama]

The scale is not the same as it was for the study.