Cam Kinase II numbers

[EAMom]

Diana, thanks for posting! Great information/insights in both posts.

[Kayanne]

This is where I also become confused between Dr. K and Dr. Latimer. We have consulted with Dr. K who told us that he felt that IVIG was superior to PEX for children who have not reached puberty and that IVIG had an 80% cure rate. He felt that steroids should only be used as a test and was not curative. Based on these posts, it seems that Dr. Latimer uses steroids as more of a treatment option as well as longer term antibiotics. She also seems to favor PEX.

 

I would love to sit with the two of them and discuss their findings. Does anyone know what Dr. Latimer says in terms of a cure rate with steroids alone?

 

elizabeth

 

When we saw Dr. Latimer in June, she believed that we were early enough in this that we may not need to consider PEX or IVIG. She specifically told us, "You are not there yet."

 

She did, however, tell us that if our daughter was not at 100% or very near there by the end of the month-long course of prednisone that these procedures are something we should be considering. We ended up extending her pred for an additional 2 weeks...right now she is essentially at 100%.

 

For me priority is to prevent future strep because she told us that if our daughter gets another infection, she will very likely have another episode. She also said the same for IVIG and PEX...so the impression that I have is that there is no "cure" per say...this is just something that needs to be managed.

 

The longer term antibiotics are for prophylaxis to prevent future strep.

[kim]

SFMom,

 

Wanted to bump up this thread because it has good info on some things that others are questioning.

 

Also wanted to ask SFmom if would you would mind me asking if the IVIG that you mentioned as part of fertility treatment was due to Factor V Leiden?

[EAMom]

We asked Dr. Cunningham. She didn't feel the difference (640 vs. 1280) was that significant.

[mama2alex]

Can someone explain how they know what these numbers mean? How do they know that over 100% means a kid has PANDAS? Have they tested kids who don't have any symptoms of PANDAS and found that they are always under 100%?

 

We are expecting our numbers back tomorrow - hopefully! And I've been reading this thread to try to understand more about the results.

[dee45]

Hi,

When we met with Dr. Latimer she gave me an article explaining test, it also had a graph which showed where the levels would be for those with tic/tourettes, PANDAS, and sydeham chorea. I will pull article and let you know where to find it.

 

Deanna

[mama2alex]

Hi,

When we met with Dr. Latimer she gave me an article explaining test, it also had a graph which showed where the levels would be for those with tic/tourettes, PANDAS, and sydeham chorea. I will pull article and let you know where to find it.

 

Deanna

 

Thanks Deanna!

[nevergiveup]

Diana, Buster,

 

 

Dr L actually mentioned to us to chart the convalescent group numbers in Dr. C 's study and notice what the average is for the PANDAS kids while not symptomatic. Pretty high and another interesting way to look at the data. Which of course is why getting a benchmark while your child is well is very helpful in interpreting the data. My daughters numbers are 144 after 7 weeks post IVIG and 2 weeks post steroids. She was on steroids 4 weeks after IVIG. Dr. C said it takes years to reduce the Cam Kinase levels to normal. And the opening of the blood brain barrier (usually weakened from infection) causes symptom to reappear if Cam Kinase is above normal, hence explaining Cam Kinase with limited symptoms. So antibiotics help prevent strep infections and the raising of Cam Kinase but what strengthens the blood barrier???? Not getting infections?? Monthly IVIG's. Tumeric??? Interferon? Zithromax?? Exercise?? Caffeine, Estrogen!!!! These are some of the things that can increase BBB do you know of anything else???

Is this not key to treatment and long term success, preventing the antibodies from leaking through the BBB and causing damage. Not to mention saving our children from future conditions caused by leaky BBB like MS.

 

Any advice?

 

 

. quote name='Buster' date='Sep 5 2009, 10:53 PM' post='37473']

Hi folks,

 

Just to remind everyone, we don't yet know what real normals are on the tests yet -- or what symptoms are tied to which antibodies (if at all).

 

PANDAS is thought to have a pathogenesis similar to Sydenham Chorea and to be caused by the combination of three events:

• the creation of an antibody to GABHS that cross-reacts with neuronal tissue
  
• a genetic pre-disposition that does not suppress the antibody
  
• a break-down in the blood brain barrier that allows the antibody to reach neuronal tissue
  

Just because we have the antibody in the blood that could cross react with neuronal tissues doesn't mean it will. Essentially you need all 3 elements to get an exacerbation.

 

It is my belief that the break-down of the blood brain barrier is the dominant reason we see exacerbations (i.e., it is the last straw). So what we see with Prednisone and likely with IVIG (and maybe even with azithromycin) is closing of the blood brain barrier by reducing inflammation of the endothelial cells.

 

We've drawn titers 3 times:

• once when we were in a calm quiescent state
  
• once during an exacerbation (pre-prednisone)
  
• once post-prednisone
  

CaM Kinase II was 185% in the calm, 253% in the exacerbation and 170% post-predinsone. So it does look like CaM Kinase II is correlated with exacerbation as per Kirvan. We also noticed that anti-Tubulin was elevated in the exacerbation. Prednisone did seem to lower anti-D1, anti-D2 and anti-Tubulin, but strangely didn't have an effect on anti-Lysoganglioside.

 

We're not sure yet why the anti-Lysoganglioside didn't drop...

 

Here's our numbers:

1. quiescent:
   • anti-Lyso: 1280
     
   • anti-Tubulin: 1000
     
   • anti-D1: 8000
     
   • anti-D2: 16000
     
   • CaM Kinase II: 183%
     

[*] exacerbation (pre-pred):

• anti-Lyso: 640
  
• anti-Tubulin: 4000
  
• anti-D1: 8000
  
• anti-D2: 16000
  
• CaM Kinase II: 253%
  

[*] 3 weeks post-pred (quiescent)

• anti-Lyso: 1280
  
• anti-Tublin:2000
  
• anti-D1: 4000
  
• anti-D2: 8000
  
• CaM Kinase II: 170%
  

Regards,

 

Buster

[kim]

Deanna,

 

Could you tell me what the #'s look like for tics/tourettes?

[EAMom]

Deanna,

 

Could you tell me what the #'s look like for tics/tourettes?

 

http://www.pandasnetwork.org/CunninghamJNICaMKinase.pdf look at figure 3b

 

tics range from (CAM kinase ll) from 50-110

 

non-pandas ADHD and OCD is on there too. Personally, I wonder if the 2 high outliers with adhd where actually undiagnosed pandas (they were in the pandas range).

[dee45]

Hi,

I found the article and tried to locate in on line to save you some time but I could not--the article is titled Antibody-mediated neuronal cell signaling in behavior and movement disorders, published in the Journal of Neuroimmunology looks like the date is 2006 hope you can find it --if not and yet want to send me your address privately I can mail you a copy that would not be a problem.

 

Deanna

[powerofprayer]

deleted....i see the article i posted was just linked above by EAMom......sorry.

[dee45]

sorry about that did not see the above post with article. one of those days.

 

Deanna

[mama2alex]

Hi,

I found the article and tried to locate in on line to save you some time but I could not--the article is titled Antibody-mediated neuronal cell signaling in behavior and movement disorders, published in the Journal of Neuroimmunology looks like the date is 2006 hope you can find it --if not and yet want to send me your address privately I can mail you a copy that would not be a problem.

 

Deanna

 

 

Deanna,

 

Thanks for the article name. And EAMom, thanks for the link. This is very helpful. Still waiting for our results!