Jump to content
ACN Latitudes Forums

Recommended Posts

What exactly do these results from the Cunningham lab tell you guys? I understand that helps you diagnose whether or not they have Pandas but is the bloodwork testing there immune systems or something else? Do you just get confirmation of Pandas or do you now know something else is going on inside there little bodies that made them more susceptible to the disease??

Link to post
Share on other sites
  • Replies 87
  • Created
  • Last Reply

Top Posters In This Topic

Top Posters In This Topic

Popular Posts

PANS/PANDAS is not unlike many (if not most) other autoimmune diseases in that it is believed to be triggered by an infection. MS, RA, Lupus, even NMDAr encephalitis - if you read about them, almost

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-publishe

Good idea Chemar, done.

Mom MD,

Andrew's was 228% plus control. I am not sure what this means. Has anyone asked Dr. C what treatments work best to lower levels?

 

Michele

We just recieved our results today and Carter's CAM Kinase II % was 201% which s very high and in the SC range. It was 101% above the basal level. It then says 233% plus control (it is confusing). I am not sure if I am looking at the 201 or the 233% as his result? She marked it on the graft at 201 in the red SC range. His anti-lysoganglioside was very high, his anti-D1 and anti-D2 were slightly elevated and his anti tubulin was elevated. SAomeone wrote out a nice description of the different levels and what they mean but I can't seem to find it.

It all makes since though and makes me relieved but also a little sick to my stomach that his levels are so high. I also can't believe I went in and told a nueologist he had SC and hesaid, "no he did not and laughed". We were planning to go for plasma exchange on July 6th but Dr. Latimer has had a family emergency and we may need to post-pone. The intensivist said we could still do the PEX but we need Dr. Latimer to tell us when stop. Does anyone know with PEX what level of antibody they get it down to before they say it is considered "cured"?

Link to post
Share on other sites

I am sure her lab has set the control so you can compare values. If not her research would not be worth anything. I am planning to call her lab this week and get someone to walk me through it. In reply to the previous response, the blood work basically tests for the actual neuronal antibodies that are doing the damage in PANDAS as well as confirm if the child has PANDAS. Normal children have normal CAM Kinase activity and children with basic OCD and Tourettes have lower CAM Kinase II levels. This is very important because it can seperate out the children that have OCD and Tourettes and whose disease has just gotten worse by a strep infection vs those who was caused by strep. It also can help diagnose the children who actually do have PANDAS but have normal ASO and antiDNase B titers. It shows that these titers are not the one actually doing the damage. I think it can also be used to document and comfirm flares in the future and guide parents with treatment.

Unfortunately, Dr. Latimer has had a family emergency and we are waiting to see if we can still do plasma excahnge on the 6th of July. The intensivist is trying to see if the hematologist will run the show in her absence. If we have to cancel and postpone it for another month or so it will be awlful. We could start from scratch and go see someone else but that scares me. The intensivist said they did a kid last week at Georgetown so I would rather do it there. They seem to have it down. My son is a beetr candidate for plasma exchange rather than IVIG because his titers are so high and they think he has had it for so long. They said with IVIG it would take multiple treatments and probablu 6-9 months to cure and with PE it would only take 3-4 days. We need to get this done this summer so we can have a normal school year.

Link to post
Share on other sites

Kirvan and Cunningham isolated three monoclonal antibodies that are present in the blood serum and spinal fluid of children with sydenham chorea and in children with PANDAS and these antibodies were not present in their controls (who had Tourettes and non-PANDAS OCD). These antibodies are not the ASO or Anti-DNAse B antibodies, but rather related to interaction with lysogangliosides (such as GM1) which affect signalling of neurons in the brain. Kirvan and Cunningham were seeking whether there was a way to distinguish children with SC or PANDAS from others and seem to have found a way.

 

Church, Martino, and Dale (in the UK) found similar results to Kirvan and Cunningham and published their results in 2006.

 

Singer (2006, 2008) was unable to reproduce the results -- however, there are numerous problems with Singer's studies -- it was not clear he had any PANDAS children in his study (he pulled from Tourettes children who had onset 3 years previous), he used older kids, and he tested using lysogangliosides from rabbit muscle rather than human brain. Let me just say that I don't think Singer's research justifies the title of his papers -- grrh. There's an excellent commentary from Dale about Singer's research in the June 2006 JNI.

 

So, the long and short is that Cunningham's research shows that CaM Kinase II activation and anti-GM1, anti-dopamine and anti-Tubulin occur with SC and to a lesser degree with PANDAS and that these two groups are separated from Controls. Their research does not show causality, just concurrance. The presence of these antibodies seems to be a diagnostic symptom.

 

The theory is that these antibodies are created (incorrectly) in response to a strain of strep and are not being surpressed by the body's T-cell regulators. There remains the question of how these circulating antibodies cross the blood-brain-barrier, but given that Kirvan was finding the antibodies in CSF, clearly the antibodies or their antigens are crossing the BBB during acute conditions.

 

What I found exciting about Cunningham and Kirvan (and Church and Dale's) work is that this diagnostic tool seems much, much more concrete for doctors for separating out the condition and recommending an appropriate treatment.

 

Regards,

 

Buster

 

 

What exactly do these results from the Cunningham lab tell you guys? I understand that helps you diagnose whether or not they have Pandas but is the bloodwork testing there immune systems or something else? Do you just get confirmation of Pandas or do you now know something else is going on inside there little bodies that made them more susceptible to the disease??
Link to post
Share on other sites

Thanks Buster & MomMD for your replies.

 

So, to put it in more layman terms, her study is proving that these kids do have PANDAS and not straightforward OCD & Tourettes etc. It is not however, telling us if there is something else going on within their immune systems that may have caused or helped contribute to the PANDAS (correct??).

Link to post
Share on other sites

The Kirvan/Cunningham tests distinguish PANDAS from straightforward OCD and Tourettes. Church and Dale (from the UK) see these anti-neuronal antibodies as diagnostic for PANDAS.

 

In terms of your question, the tests do indicate that something is odd in the immune system because the antibodies should not normally be there. The presense and cross-reactivity with lysogangliosides indicates either a defective B-cell or a defective T-regulatory cell. The T-regulatory suppress anti-host anti-bodies. We don't know what the exact defect is here, but the existence of the anti-neuronal antibodies is the symptom.

 

Regards,

 

Buster

 

 

Thanks Buster & MomMD for your replies.

 

So, to put it in more layman terms, her study is proving that these kids do have PANDAS and not straightforward OCD & Tourettes etc. It is not however, telling us if there is something else going on within their immune systems that may have caused or helped contribute to the PANDAS (correct??).

Link to post
Share on other sites

Hi Mommd, I know a family who had pex, for pandas, at Georgetown, prescribed by Dr latimer. They were absolutely impressed with the hospital and doctors there, and mentioned that at that point Dr Latimer was hardly even involved. They said it was intimidating having the central line, and that the pex machine was noisy, but that the doctors and nurses was top notch and at their side the entire time. I wish you luck, and please keep us posted. We are biding our time, but will probably end up doing either pex or ivig at Georgetown in the future (we are luck enough to live in DC).

 

A question about the Cunningham test: I dont necessarily feel I need proof of pandas, since dd did have a positive culture and sudden onset of symptoms within the same month. But if I am considering pex or ivig, think it would be worthwhile- since they are a big step, and dd has "only" had one episode. Will the test still come back positive if she is on abx and not in a flare of symptoms. I mean, many of her issues are still there simmering and surfacing when she is tired or stressed, but she is in no way like she was at her worst. I only hesitate because she is 5, and lives in fear of doctors and needles....

Link to post
Share on other sites

hanks for the encouraging words about Geoegetown. Dr. Latimer's office called today and in addition to Latimer being ourt, the Hem/onc doctor managing the plasma exchange is going on vacation for three weeks. I spoke with the head of the PICU today and he was great. He said the head of hem/onc would be in charge of Carte's treatment and that he thought we could still plan on next week. So far I have been very impressed with him.

I am not sure about the blood test and you may want to call Dr. Cunningham's lab. My son's titers were still in the SC range even afer 12 weeks of antibiotics. I just wanted to get a baseline before we did the PE. It turned out to give me just more confirmation that I was doing the right thing.

Hi Mommd, I know a family who had pex, for pandas, at Georgetown, prescribed by Dr latimer. They were absolutely impressed with the hospital and doctors there, and mentioned that at that point Dr Latimer was hardly even involved. They said it was intimidating having the central line, and that the pex machine was noisy, but that the doctors and nurses was top notch and at their side the entire time. I wish you luck, and please keep us posted. We are biding our time, but will probably end up doing either pex or ivig at Georgetown in the future (we are luck enough to live in DC).

 

A question about the Cunningham test: I dont necessarily feel I need proof of pandas, since dd did have a positive culture and sudden onset of symptoms within the same month. But if I am considering pex or ivig, think it would be worthwhile- since they are a big step, and dd has "only" had one episode. Will the test still come back positive if she is on abx and not in a flare of symptoms. I mean, many of her issues are still there simmering and surfacing when she is tired or stressed, but she is in no way like she was at her worst. I only hesitate because she is 5, and lives in fear of doctors and needles....

Link to post
Share on other sites

Just to clarify how to read results from Cunningham.

 

The Positive Control is just a value that is used in the lab from a prior sample that indicates that the test actually worked. The % is checked to verify that it matches a prior run (i.e., within experimental error).

 

In Mom_MD's case, it appears that Cunningham used an SC positive control. Checking with Dr. Cunningham, they use a prior serum to verify repeatability when they test your child's serum. When they run out of one, they move onto the next positive control. They do this to verify that the test worked, but the result on the positive control is largely irrelevant -- it sort of is an internal lab measure that the test worked..

 

You can safely ignore the positive (plus) control.

 

On the CaM Kinase II %, it is a measure above the basal amount. So you should add 100% to it.

 

Hope that helps,

 

Buster

 

 

We just recieved our results today and Carter's CAM Kinase II % was 201% which s very high and in the SC range. It was 101% above the basal level. It then says 233% plus control (it is confusing). I am not sure if I am looking at the 201 or the 233% as his result?
Link to post
Share on other sites

Kelly,

 

I recommend sending in spun down serum (as that is what they request) -- certainly check with the lab if there's a reason your lab can't spin it down. It transports better than whole blood. In addition many states have tighter restrictions on transporting whole blood. Serum is like a rock.

 

Can you send in whole blood? Or, does it need to be spun first?

 

Kelly

Link to post
Share on other sites
  • 4 weeks later...

I got my results back today. Can anybody tell me what they mean?

 

Cam KinaseII: 242%

 

Then on the bottom of the report it has a chart for neg/positive controls for antibodies at various time intervals. I know those are just for comparison, but I'm wondering if that's a range of positive results? I mean is anything above the "neg" value considered positive?

Link to post
Share on other sites

Hi ,

 

My son is going to be tested. I am waiting for the kit in the mail. Just wondering if, labs will do the blood work or do you have to pay them to do it? For all of you who had the test done, were your childrens positive results in the high range? Any feedback would be appreciated. Thanks Char...

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...