hot off the press

[norcalmom]

Normal kids with strep throat have an average Cam K of 139...thats in the lower pandas range. This is normal kids ..non-pandas kids, that are in the middle of a strep throat infection..that Cunningham is now testing. It was included in a new letter that is going out when you have your kids Cam K taken. We just got my DS's back - he is 131 at 17 weeks post ivig. Here is the paragraph with the new information:

"In looking at your child’s CaM Kinase activation values, you can see where they place on the graph in the Journal of Neuroimmunology article (Fig 3A) enclosed. We have tested normal children and their CaM kinase value is between 0-130 and children with strep throat average around 139. You will see your child’s value in the graph and can place it in a very high range 180->200 or in a midhigh PANDAS range from 180-165 or in the mid PANDAS range of around the average of 165-155 or in the lower PANDAS range from 135-155. In each CaM kinase test, a positive control (180->200) is tested as well as a negative control (0-130). These control values are included with your child’s Cam Kinase II score. "

 

 

note ...my son is 131...which isn't listed on these ranges at all! (kinda skips 130-135).

[Phasmid]

This is interesting. By this, my son would move down to "low PANDAS" range from mid range. This actually makes more sense, as he was not right in a huge exacerbation at time of his blood draw.

 

 

[norcalmom]

I think this would indicate that you should really make sure you don't have active strep before taking this test. The fact that normal kids get raised cam K with strep might have them adjusting the ranges...along with just more data overall. They don't say what the range is for normal kids with strep -this would would be more interesting than the average.

 

We did both our draws when my son was at baseline. First draw, 163. Second after ivig 131. For us, the numbers do correlate with symptoms. He's much better - but still one nagging intrusive thought thing (but before he had compulsion, tics, insomnia, ADD-ish stuff and academic stuff at baseline).

 

They don't say if any ainti-neuronals are raised with normal kids with strep or not.

[trggirl]

Thanks for posting this!!!

[browneyesmom]

Thank you for posting this information!! I have been away from this forum, obviously much too long. Will someone please help me with understanding these labs... or provide a link where I can learn more about these and how my child's situation fits into this?

 

Thanks!

Denise

[EAMom]

I wonder how long it takes the Cam to drop once their strep infection is treated?

[norcalmom]

I sent an email to ask, but don't expect to get too much info on study stats they haven't published.

 

Browneyes- Cunningham tests are a study of pandas kids blood and a protein called Cam Kinase II as well as 4 anti-neuronal antibodies that are found in high amounts in Sydenhams Chorea as well pandas (and other?) symptomatic children. It costs $400 (tax deductible "contirbution") and you can get instructions for a kit so that you can get your child's blood drawn by emailing kathy-alvarez@ouhsc.edu There are lots of posts about the test, and I think the research paper may be pinned at the information on pandas on the first page of our forum (not 100% sure ont hat one...but its out there somewhere!) If you can't find it pm me and I will dig up for you.

[eljomom]

As far as Cam K and how long it takes to drop after strep---I don't know. IN our case, cam K was 168 NOT HAVING HAD strep recently---in fact it was done 3 months after the fever that set symptoms in high gear, which they STILL are. All titers (run twice) have been almost nonexistant. We believe strep may have been LOOOONG ago, like a couple years, when the ocd started. Wish I'd known about pandas then, and not just chalked it up to quirky germaphobe issues:(

[ajcire]

Ok, so this changes things a lot doesn't it? My son's camk was 141 which was done a little over a year ago. Dr. C. noted that this was in the mid pandas range... but now this would be considered low pandas range? My son whom I consider to be mild compared to what I read here did not have strep throat at the time of the blood draw but possibly prior to it.

I guess more telling would be that all the antineural tests were elevated?

Edited December 20, 2010 by ajcire

[PacificMama]

For newcomers, it should be clarified that the Cunningham “test” is NOT specific to any one infection. Dr. Cunningham has stated that there are a number of bacterial / viral infections that will cause the CamK to rise, as well as the presence of the anti-neuronal antibodies. These infections include strep, lyme, and others.

 

The “test” simply indicates that this autoimmune process is occurring. NOT which infection is causing it.

[eljomom]

PacificMama---so antineuronal antibodies can cause the cam K to rise??

[PacificMama]

Gosh... I think I will defer to previous explanations or others to exlain the mechanism of why/how the CamK rises.

 

I just wanted to point out that there are a different number of bacteria/viruses that can activate this process. The process which activates the antineuronal antibodes, and the rise in Cam K.

People might be under the impression that this is somehow a test that verifies a strep situation, and that's not the case. You would have to do seperate titer testing and evaluation for that.

 

For example, my daughter who dealt with lyme, took the Cunningham "test" at the request of her llmd who is working with Dr. Cunningham. She had high camk (163 I think), and high antineuronal antibodies for 2 of 4. No strep ever -- and no presence of strep titers -- checked regularly. (She is now symptom-free).

 

Others could better say the various combos that show up here -- that is, does everyone with high camk also have high antineuronals? I do not think that is the case for all. Some just have high CamK. Also, various combos of the antineuronals show up given the 4 possibilites.

 

Hope that helps... and I haven't confused the discussion.

Mary

 

PacificMama---so antineuronal antibodies can cause the cam K to rise??

[smartyjones]

For example, my daughter who dealt with lyme, took the Cunningham "test" at the request of her llmd who is working with Dr. Cunningham. She had high camk (163 I think), and high antineuronal antibodies for 2 of 4. No strep ever -- and no presence of strep titers -- checked regularly. (She is now symptom-free).

 

PacificMama---so antineuronal antibodies can cause the cam K to rise??

 

just curious -- have you done the cunningham now that she is symptom free?

[PacificMama]

For example, my daughter who dealt with lyme, took the Cunningham "test" at the request of her llmd who is working with Dr. Cunningham. She had high camk (163 I think), and high antineuronal antibodies for 2 of 4. No strep ever -- and no presence of strep titers -- checked regularly. (She is now symptom-free).

 

PacificMama---so antineuronal antibodies can cause the cam K to rise??

 

just curious -- have you done the cunningham now that she is symptom free?

 

No, we do not have any plans to retest (unless we were asked to as part of the study or something). Often with lyme, the resolution of the infections brings about a resolution of any autimmune problems it sets off. Perhaps for some that does not happen, and so some people with lyme do seek IVIG. LOTS of research in the lyme world going on regarding autoimmune issues.

 

Someone else would have to verify, but I'm not sure that there are any publishings re the Cunningham study on the tracking of this sort of data (the rise and fall of camK/ antineuronals as it relates to symptom resolution or exacerbation?).

 

I hope one day this study has more practical value. That is, a person could take their results into a doctor and have a corresponding plan. But right now, all you get is verification that you may have an autoimmune issue going on. IVIG/PEX might be the fix for that. But because the results of the "test" do not tell you what infection caused this onset, it still does not address the issue that there may indeed be serious infections that need to be evaluated for and treated. And maybe treating these infections would correct the autoimmune neuropsych issues -- in addition to, or in place of, IVIG.

[momcap]

Someone else would have to verify, but I'm not sure that there are any publishings re the Cunningham study on the tracking of this sort of data (the rise and fall of camK/ antineuronals as it relates to symptom resolution or exacerbation?).

 

Page 6, 2nd paragraph, 2nd sentence: "...antibodies from acute PANDAS sera taken in the symptomatic phase of disease activated CaM kinase II in human neuroblastoma cells. Matched convalescent sera, obtained in the absense of symptoms, did not activate CaM kinase II in comparison to acute sera."

 

I have been reading this study over and over and over again. DS7 has confirmed strep issues (high ASOs), but I also suspect lyme. I'm trying to get my head around what all of this means. I know that other things can cause high CaM K, but I thought the 4 specific anti-neuronal antibodies being studied here are specific to strep. Can someone correct me if I'm wrong? In the study they are referred to as "antibodies directed against an epitope of the group A carbohydrate of Streptococcus pyogenes", and later "antibodies against the streptococcal associated epitope G1cNAc". Does anyone have a study or quote confirming that other infections can lead to production of these particular antibodies?