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Cunningham Blood Tests

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Hi, y'all:

 

I know that some other folks on here have elected to participate in Dr. Madeleine Cunningham's (leading researcher from OUHSC) blood test research study. Dr. Cunningham has co-published a number of journal articles with Dr. Swedo and others in relation to her blood assays and their dramatic correlation with both Sydenham's Chorea and PANDAS patients. Basically, they show elevated anti-neuronal antibody titers that are much more reliable indicators than the standard "ASO and Anti-DNase B" titer tests, in particular CaM kinase II levels (enzyme critical to neurotransmitter function in the brain). These titers show much higher levels for PANDAS kids vs. classic OCD, tics / Tourettes, ADHD, or healthy controls. (See http://www.jni-journal.com/article/S0165-5...0241-4/abstract ).

 

Well, we enrolled in the study, too. Our son's results were consistent with his PANDAS diagnosis: elevated anti-lysoganglioside, anti-tubulin, and signaling antibody levels. His CaM kinase II was at 187% of control, which puts him at the upper end of Dr. Cunningham's published PANDAS patient data.

 

You'd think this would be pretty definitive... but we STILL can't get a local doc to go along with the PANDAS diagnosis (although one is "considering the evidence"). :)

 

Anyway, wanted to share this and see what other study participants are experiencing with their children's blood test results? Seems like this is a "smoking gun" that should convince (most) doubters, so if you're getting push-back from your local docs, might be worth volunteering for this study. More info about Dr. Cunningham can be found here: http://www.ouhsc.edu/mi/faculty/cunningham.html .

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I've been corresponding with Dr. Cunningham. She offered the tests you mentioned. We don't need results for diagnosis. My son's doctors are on board with SC. But more empirical data might be helpful in the future. Also, I want to see how my son's values compare w/others. She probably has her hands full fielding queries, but maybe she'd be willing to go to bat for your son with a local immunologist or infectious disease MD.

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Hi, y'all:

 

I know that some other folks on here have elected to participate in Dr. Madeleine Cunningham's (leading researcher from OUHSC) blood test research study. Dr. Cunningham has co-published a number of journal articles with Dr. Swedo and others in relation to her blood assays and their dramatic correlation with both Sydenham's Chorea and PANDAS patients. Basically, they show elevated anti-neuronal antibody titers that are much more reliable indicators than the standard "ASO and Anti-DNase B" titer tests, in particular CaM kinase II levels (enzyme critical to neurotransmitter function in the brain). These titers show much higher levels for PANDAS kids vs. classic OCD, tics / Tourettes, ADHD, or healthy controls. (See http://www.jni-journal.com/article/S0165-5...0241-4/abstract ).

 

Well, we enrolled in the study, too. Our son's results were consistent with his PANDAS diagnosis: elevated anti-lysoganglioside, anti-tubulin, and signaling antibody levels. His CaM kinase II was at 187% of control, which puts him at the upper end of Dr. Cunningham's published PANDAS patient data.

 

You'd think this would be pretty definitive... but we STILL can't get a local doc to go along with the PANDAS diagnosis (although one is "considering the evidence"). :wacko:

 

Anyway, wanted to share this and see what other study participants are experiencing with their children's blood test results? Seems like this is a "smoking gun" that should convince (most) doubters, so if you're getting push-back from your local docs, might be worth volunteering for this study. More info about Dr. Cunningham can be found here: http://www.ouhsc.edu/mi/faculty/cunningham.html .

 

So, how does one go about enrolling in this study?

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I just e-mailed Dr. Cunningham (using the e-mail address on her contact web page above), explained that my son had been diagnosed with PANDAS, and asked about participating. OUHSC then mailed us the necessary forms, the blood vials, packing materials, and instructions on how to return the serum samples. We had the blood drawn at our local lab (they didn't charge us or require any paperwork once we showed them the study info) and shipped it back. That simple! A few weeks later, Dr. C e-mailed me a quick summary of results and snail-mailed the details, along with supporting journal publications for our doubting docs.

 

Hope that helps!

 

 

So, how does one go about enrolling in this study?

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I should add that the best time to do the Dr. Cunnningham's tests are when your child is in an exacerbation. PANDAS kids who aren't in an exacerbation usually have values that look like normal kids.

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Right, EA Mom. So everyone be careful. We got the vials sent to us, but, decided not to get the test done...yet. The kids are stable and she recommenended to wait if and until they had an episode, as the results could very likely be normal. However, she said we could use these values as a baseline if we wanted.

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I should add that the best time to do the Dr. Cunnningham's tests are when your child is in an exacerbation. PANDAS kids who aren't in an exacerbation usually have values that look like normal kids.

 

 

Hi

 

All of this sounds fascinating. I would like to get my son in the study. I don't know what the best time would be. He had IVIG on March 25 and 26th and is taking the prophylacitc amoxicillan dose. We have seen many symptoms such as the ADD like behavior, separation anxiety return to normal. Its hard to describe but his personality has retuned. However, he is still ticking a lot. For a while his tics were way worse than before we started. Is this considered an exacerbation ? Dr. K keeps telling me that these are signs that his body is "flipping back the pages" I don't know. I have had so many doubts. I am trying to keep the faith. I would like confirmation that he does indeed have PANDAS.

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Not sure. Ideally you would want to get levels before IVIG and then perhaps 1mo. and 1 year later to compare. It's a little difficult to tell if don't have pre-IVIG values. It might be reasonable, to wait a couple of months, see how your son is doing, and then consider a blood draw if you end up feeling a 2nd IVIG might be necessary.

 

I'm not surprised however, that the tics are your remaining symptom, as tics are somewhat more resistant to IVIG (and perhaps pex) treatment than other PANDAS behaviors (anxiety, ocd etc.) (at least tics appeared to be that way in the Swedo IVIG/pex study...) .

 

However, if your son didn't have PANDAS, I really doubt his anxiety, ADD, other issues would have improved (even temporarily) with IVIG. So, that in a sense, that is a confirmation of the PANDAS diagnosis.

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Thanks for the advice....we have the vials but we are going to wait and see. Right now he is stable. His tics are slowly subsiding. He hasn't had any big motor tics for about a week, just vocal tics which are faint. I think you were right in saying that we really needed pre-IVIG values. If we had the bloodwork done and had "normal vlaues" then we would all be confused.

 

Thanks

 

Anne

 

 

 

 

 

 

Not sure. Ideally you would want to get levels before IVIG and then perhaps 1mo. and 1 year later to compare. It's a little difficult to tell if don't have pre-IVIG values. It might be reasonable, to wait a couple of months, see how your son is doing, and then consider a blood draw if you end up feeling a 2nd IVIG might be necessary.

 

I'm not surprised however, that the tics are your remaining symptom, as tics are somewhat more resistant to IVIG (and perhaps pex) treatment than other PANDAS behaviors (anxiety, ocd etc.) (at least tics appeared to be that way in the Swedo IVIG/pex study...) .

 

However, if your son didn't have PANDAS, I really doubt his anxiety, ADD, other issues would have improved (even temporarily) with IVIG. So, that in a sense, that is a confirmation of the PANDAS diagnosis.

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I should have my girls results back in 1-2 weeks. Our doc has agreed to treat based on what the results show. Good luck to you with the doc who is considering it. Can you travel to see any of the docs who will treat based on the results? I don't know where you live.

 

Susan

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I just got the kit for the blood draw and I'm confused. (not so unusual) The release/consent papers say that they will not share results with anybody, including the study participants, but some of you have said you got results back....so what's up with that?

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They must just word it that way for privacy and professional guidelines. They did tell me by email that they will get back to me with the results as they have done with others here on this board. I am waiting it has been a week.

 

Michele

 

I just got the kit for the blood draw and I'm confused. (not so unusual) The release/consent papers say that they will not share results with anybody, including the study participants, but some of you have said you got results back....so what's up with that?

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Thanks, michele, That makes me feel better. The lab is on vacation next week, until July 6th.- Just so you don't get too nervous about the wait. Hope they send your results before they leave, though...the waiting isn't fun.

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I will be so interested to see what they find out. The time I had the DAN blood testing done the DAN! really found alot of interesting things in his labs but treating it was so involved and complicated, I somehow got lost along the way. I wonder if this will be the same, alot of numbers I don't know what to do with? I just wish there was a fix and maybe the IVIG and Dr.Latimer will be it. Our kids all deserve a break and so do we! I do wonder how the group that had the IVIG done last fall are all doing? I think the year mark will tell alot.

 

Michele

 

 

Thanks, michele, That makes me feel better. The lab is on vacation next week, until July 6th.- Just so you don't get too nervous about the wait. Hope they send your results before they leave, though...the waiting isn't fun.

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We've received our test results back and I'm confused. I've left Dr. C a message and hope to hear back. Does anyone know who's gotten your results back..... If you have any Cam Kinase does that mean PANDAS? Or does it need to be over the Positive serum control to be definate? My girls both had elevated test results but low % Cam Kinase so now I'm confused. They were in a slight episode at the dime of the draw with V. strep (dd6) verified a few days later but I would not consider it a full blown episode. It was caught quickly and treated (after the blood draw) with zith.

 

I was hoping for any feedback in the mean time before I hear from her if anyone has any thoughts.

 

Thanks,

 

Susan

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